http://www.msfocus.org/news.aspxMultiple Sclerosis Foundation NewsAn educational webinar on the Affordable Care Act Health Insurance Marketplaces: Overview for the MS Coalition” will be presented at 1:00pm (EDT) on May 21st. With enrollment in the marketplace scheduled to begin in October, now is the time to gather information so you can best understand the options that will be available. The webinar is free but registration is required. To register go to https://tevausa.webex.com/tevausa/onstage/g.php?t=a&d=794060172. This is also the link you will use to join the webinar when it begins. http://www.msfocus.org/news-details.aspx?newsID=2522013-05-14T00:00:00-07:00Contrary to a widely-accepted belief, African Americans may have a higher risk of developing MS than Caucasians, according to a new study. The study found that African-Americans had a 47 percent increased risk of MS compared with Caucasians, while Hispanics and Asians had a 58 and 80 percent lower risk than Caucasians. “Our population-based study is the first of its kind to look at this question. The belief (that African Americans have a lower risk of developing MS) was based on evidence that was problematic,” said study author Annette Langer-Gould, MD, with Kaiser Permanente Southern California Department of Research & Evaluation in Pasadena,Calif., and a member of the American Academy of Neurology. For the study, researchers examined the entire database of more than 3.5 million members of the Kaiser Permanente Southern California health plan over a three-year period and identified 496 people with newly diagnosed MS. This type of study, which is termed population-based, is considered a more accurate way to determine disease risk than to examine only those people who attend a specific clinic or hospital. Sex differences in MS risk were also highlighted in the study. The higher risk in African-Americans was found in women only whereas the lower risk for Hispanics and Asians was found in both sexes. African-American women had triple the risk of MS compared to African-American men. African-Americans made up 21 percent of those with MS, while they made up only 10 percent of the total study population. Caucasians made up 52 percent of those with MS, compared to 38 percent of the total population. A total of 23 percent of those with MS were Hispanic, compared to 40 percent of the total population. Asians made up 3 percent of those with MS, compared to 9 percent of the population. “One explanation for our findings is that people with darker skin tones have lower vitamin D levels and ultimately, an increased risk, but this would not explain why Hispanics and Asians have a lower risk than Caucasians,” said Langer-Gould. “About 19,000 people per year, or 250 people per week, will be diagnosed with MS in the US alone. These numbers highlight the need for more minorities to be included in MS studies, so that we can fully understand how race may play a role in developing the disease.” The study was supported by the National Institutes of Health, the National Institute of Neurological Disorders and Stroke and the National MS Society. It was reported in the journal Neurology, the medical journal of the American Academy of Neurology. http://www.msfocus.org/news-details.aspx?newsID=2512013-05-06T00:00:00-07:00Can Do Multiple Sclerosis is excited to present a new two-day TAKE CHARGE Program starting on Friday, June 21, 2013, and ending on Sunday, June 23, 2013, in Charleston, West Virginia at the Embassy Suites Charleston Hotel. The TAKE CHARGE Program is a wellness weekend for people living with MS and their support partners. This program will explore an interactive and multi-disciplinary approach to MS care management in which participants learn the individualized skills and mindset to take charge of their health and life with MS. In collaboration with the National MS Society – Blue Ridge Chapter, TAKE CHARGE provides educational lectures, interactive workshops, group interactions with MS experts and with others living with MS. “We are very excited about this program, which we feel will be a life-changing experience for people living with MS and their support partners on an emotional, interpersonal, physical and intellectual level” said Lauri O’Brien, Director of Programs, Can Do MS. “We offer a comprehensive, personalized and interdisciplinary approach to enable people to become active co-managers of their health and well-being. Program participants will work with our team of MS experts to craft strategies that will bring a greater sense of understanding and control over MS.” Can Do MS connects the expertise of five industry professionals across the field of MS care management throughout the TAKE CHARGE Program. This includes a Nurse Practitioner, Occupational Therapist, Physical Therapist, Psychologist and a Dietician. The program is customized to cover topics ranging from physical activity, managing MS, goal-setting, communication, fatigue, eating well and emotional well-being. Additionally, there will be support partner workshops offered throughout the weekend. This allows the opportunity for a spouse, parent, sibling, friend, neighbor, etc. to not only expand their own understanding of MS, but to actively participate in identifying their needs, goals, concerns and challenges to live fully with MS together. The TAKE CHARGE Program is limited to 70 participants and will fill quickly. Can Do MS requires a $50 application fee, which includes all meals, hotel accommodations, lectures and workshops for the weekend program. The development of the TAKE CHARGE Program was made possible from the generous support of Novartis Pharmaceuticals. The 2013 program is supported by Genentech, Inc., The Barbara Epstein Foundation, Mellam Family Foundation, Rolex Watch USA, and the Roy A. Hunt Foundation. For additional information and to register for the program, please visit www.mscando.org/TAKECHARGE or call Lauri O’Brien at 800-367-3101 ext. 1291. A national nonprofit organization based in Edwards,Colorado, Can Do Multiple Sclerosis is an innovative provider of lifestyle empowerment programs that empower people with MS and their support partners to transform and improve their quality of life. For more information, visit the organization’s website at www.mscando.org or call 970-926-1290.http://www.msfocus.org/news-details.aspx?newsID=2502013-04-04T00:00:00-07:00April 10, 2013 has been designated National Call-in Day for Complex Rehab Technology (CRT). It’s a chance for concerned citizens to help ensure access for people with disabilities to the CRT they require by asking elected officials to support key legislation. CRT includes specialized manual and power wheelchairs, seating and positioning devices, and other adaptive equipment To participate in this advocacy initiative, call the U.S. Capitol switchboard at (202) 225-3121 and ask for your Senators' and Representative's office. If you don't know your Senators' or Representative's names, you can go to http://capwiz.com/medgroup/state/main/ and enter your zip code to find them. Request that they: Ask their members of Congress to support Bill H.R. 942 to establish a separate benefit category for CRT under Medicare Sign on as a co-sponsor of Bill H.R. 942 to create a separate benefit category for CRT under Medicare Introduce and support a companion Bill in the Senate (for Senators) For additional information about CRT and the separate benefit category initiative go to www.access2crt.org. Background: Congressmen Joe Crowley (D-NY) and Jim Sensenbrenner (R-WI) have introduced H.R. 942, the "Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013" to create a separate benefit category for CRT to protect and improve access to these important products and services for people with significant functional and physical limitations. Other needed changes include the elimination of Medicare's “In the Home” restriction for CRT products. The objective is to improve access for people with disabilities of all ages, whether covered by Medicare, Medicaid, or private insurance. http://www.msfocus.org/news-details.aspx?newsID=2492013-04-03T00:00:00-07:00The U.S. Food and Drug Administration (FDA) has announced its approval of Tecfidera™ (dimethyl fumarate), a new first-line oral treatment for people with relapsing forms of multiple sclerosis. Biogen Idec has stated it will make this oral capsule available to people living with MS in the United States in the coming days. Tecfidera has been clinically proven to significantly reduce important measures of disease activity, including relapses and development of brain lesions, as well as to slow disability progression over time. The FDA approval of Tecfidera is based on data from a clinical development program that included DEFINE and CONFIRM, two global Phase III studies that enrolled more than 2,600 people. In the ongoing extension study, ENDORSE, some participants receiving Tecfidera have been followed for more than four years. In DEFINE, Tecfidera administered twice daily significantly reduced the proportion of people who relapsed by 49 percent, the annualized relapse rate (ARR) by 53 percent, and 12-week confirmed disability progression, as measured by the Expanded Disability Status Scale (EDSS), by 38 percent compared to placebo at two years. In CONFIRM, twice-daily Tecfidera reduced ARR by 44 percent and the proportion of people who relapsed by 34 percent compared to placebo at two years. While not statistically significant, Tecfidera showed a 21 percent reduction in 12-week confirmed disability progression in CONFIRM. Both studies also showed that Tecfidera significantly reduced lesions in the brain compared to placebo, as measured by magnetic resonance imaging (MRI). “In clinical trials, patients treated with dimethyl fumarate had less disease activity when compared to patients on placebo – whether they were in the early stages of MS or had more established disease,” said Robert Fox, M.D., medical director of the Mellen Center for Multiple Sclerosis at Cleveland Clinic, lead investigator of the CONFIRM study, and a paid advisor for Biogen Idec for projects not related to Tecfidera clinical development. The most common side effects associated with Tecfidera are flushing and gastrointestinal (GI) events (such as diarrhea, nausea and abdominal pain). In clinical studies, flushing symptoms usually began soon after initiating treatment, were mostly mild to moderate, and usually improved or resolved over time. The incidence of GI events was higher early in the course of treatment (primarily in the first month) and decreased over time. Overall, clinical trial discontinuations due to flushing and GI events were low. Tecfidera may decrease lymphocyte counts in some people. In clinical studies, mean lymphocyte counts decreased during the first year of treatment and then remained stable. The incidence of infections and serious infections was similar in Tecfidera-treated individuals and those on placebo. There were no opportunistic infections in Tecfidera-treated individuals. In those with low lymphocyte counts, there was no increased incidence in serious infections. People taking Tecfidera should have a complete blood count (CBC) before starting treatment to measure lymphocyte counts. A follow up CBC is recommended annually and at the discretion of the treating physician. Tecfidera has not been studied in people with pre-existing low lymphocyte counts and caution should be exercised when treating these individuals. Tecfidera has a Pregnancy Category C. Before starting treatment with Tecfidera, women should talk to their doctor if they are pregnant or planning to become pregnant. For complete Tecfidera prescribing information, please visit Tecfidera.com.http://www.msfocus.org/news-details.aspx?newsID=2482013-03-27T00:00:00-07:00We had a fantastic turnout for all three of our teleconferences this year. If you missed any of them, we have made the full recording available to you. We would like to thank you for participating and a special thanks to Dr. Kantor, Patty Bobryk, MHS, PT, and Lara Stepleman, Ph.D. for taking to time to speak with us. “Deciding Which Disease Modifying Therapy is Right for You” with Daniel Kantor, M.D http://www.msfocus.org/audios/Deciding-Which-Disease-Modifying-Therapy-is-Right-for-You.mp3 “Adapting to Changing Mobility Needs” with Patty Bobryk, MHS, PT, MSCS, ATP http://www.msfocus.org/audios/Adapting-to-Changing-Mobility-Needs.mp3 “Adjusting to Living with MS” with Lara Stepleman, Ph.D. http://www.msfocus.org/audios/Adjusting-to-Living-with-MS.mp3http://www.msfocus.org/news-details.aspx?newsID=2472013-03-26T00:00:00-07:00The 65th annual meeting of the American Academy of Neurology (AAN) is underway in San Diego, Calif. The following breaking news is related to multiple sclerosis. Read more on these topics and others in the MSFYi, the MSF’s monthly internet newsletter. You can subscribe for free by going to www.msfocus.org, clicking on “MSF Publications”, and following the simple steps. *The first controlled clinical trial to test the safety and efficacy of interventional endovascular therapy on the symptoms and progression of multiple sclerosis has found that the intervention, sometimes called the “liberation treatment,” does not improve outcomes. In a few cases, the treatment made symptoms worse. University at Buffalo researchers presented their results in an “Emerging Science” poster session. *Biogenic Idec Inc. announced its experimental MS drug peginterferon beta-1a reduced the annual relapse rate of people with MS by 36 percent when dosed once every two weeks. Peginterferon beta-1a, which will be marketed, if approved, under the brand name Plegridy, is an injectable drug designed to reduce the dosing schedule of standard interferon drugs (such as Biogen's own Avonex®), which are typically dosed at least once a week. *New data presented show Gilenya® (fingolimod), the first oral disease modifying therapy approved to treat relapsing forms of MS, significantly and consistently reduced the rate of brain volume loss. Results also showed that Gilenya reduced annualized relapse rates across important subgroups; and additional data reinforce Gilenya's safety profile in people treated up to four years. *Treatment with adrenocorticotropic hormone (ACTH) may be helpful for people whose MS is not well-controlled through their regular treatment, according to the results of a pilot study. Regina Berkovich, MD, Ph.D., from the Keck Medical Center of the University of Southern California in Los Angeles, presented her findings during the Emerging Science session at the AAN annual meeting.http://www.msfocus.org/news-details.aspx?newsID=2462013-03-21T00:00:00-07:00On Tuesday, March 5th, our first teleconference in the 2013 National MS Education and Awareness Month series was held. Dr. Daniel Kantor’s talk on, “Deciding Which Disease Modifying Therapy is Right for You” produced a wonderful turnout. If you were not able to listen in, we have made the full recording available to you. http://www.msfocus.org/audios/Deciding-Which-Disease-Modifying-Therapy-is-Right-for-You.mp3. Upcoming teleconferences include: Adapting to Changing Mobility Needs Patty Bobryk, MHS, PT, MSCS, ATP Orlando Health, MS Comprehensive Care Center of Central Florida Monday, March 11, 2013 9:30 p.m. –10:30 p.m. EST/ 6:30 p.m. – 7:30 p.m. PST Adjusting to Living with MS Lara Stepleman, Ph.D. Director of Psychological Services for the Augusta MS Center Tuesday, March 19, 2013 9:30 p.m. –10:30 p.m. EST/ 6:30 p.m. – 7:30 p.m. PST To join: call 1-888-550-5602 Code 23441168. To view the presentation: http://ccc.spiderphone.com/23441168. http://www.msfocus.org/news-details.aspx?newsID=2442013-03-08T00:00:00-08:00On Tuesday, March 5th, our first teleconference in the 2013 National MS Education and Awareness Month series was held. Dr. Daniel Kantor’s talk on, “Deciding Which Disease Modifying Therapy is Right for You” produced a wonderful turnout. If you were not able to listen in, we have made the full recording available to you. http://www.msfocus.org/audios/Deciding-Which-Disease-Modifying-Therapy-is-Right-for-You.mp3. Upcoming teleconferences include: Adapting to Changing Mobility Needs Patty Bobryk, MHS, PT, MSCS, ATP Orlando Health, MS Comprehensive Care Center of CentralFlorida Monday, March 11, 2013 9:30 p.m. –10:30 p.m. EST/ 6:30 p.m. – 7:30 p.m. PST Adjusting to Living with MS Lara Stepleman, Ph.D. Director of Psychological Services for theAugustaMS Center Tuesday, March 19, 2013 9:30 p.m. –10:30 p.m. EST/ 6:30 p.m. – 7:30 p.m. PST To join: call 1-888-550-5602 Code 23441168. To view the presentation: http://ccc.spiderphone.com/23441168. http://www.msfocus.org/news-details.aspx?newsID=2452013-03-08T00:00:00-08:00Stout Sports Bar & Grill in Oakland Park, Fla. in association with Cre8ive Connexions is inviting all healthcare professionals to join them in “Appreciating our Nurses” on Nurses Night from 5 to 9 p.m. on Wednesday, March 13th. The Multiple Sclerosis Foundation will be present to share information about our programs and services in honor of National MS Education and Awareness Month®, which is held annually in March. The event is free and includes appetizer specials, complimentary drink specials and raffles. (Nurses and students bring an ID to receive a free drink.) RSVP at www.cre8iveconnexions.com. For more information contact Anjanee at anjanee@cre8iveconnexions.com or 954-649-0095. Stout is located at 3419 N. Andrews Avenue, Oakland Park, FL 33309.http://www.msfocus.org/news-details.aspx?newsID=2422013-03-06T00:00:00-08:00On Friday, March 29th from 7 to 10:00 pm, the Full Moon Party at the iconic Ritz-Carlton, Ft. Lauderdale will be held on their beautiful pool deck to benefit the Multiple Sclerosis Foundation. There will be complimentary cocktails with a $10 donation as well as a complimentary issue of the glossy and vibrant Lifestyles Magazine. A beautiful display of Fiora Charms®, the first to combine jewelry and perfume in a stunning filigree bead emitting a captivating scent, will also be on site. Please join us for this special event as National MS Awareness Month ® draws to an end. The Ritz-Carlton is located at One North Ft. Lauderdale Blvd. For more information call 954-465-2300. http://www.msfocus.org/news-details.aspx?newsID=2432013-03-06T00:00:00-08:00Deciding Which Disease Modifying Therapy is Right for You Daniel Kantor, M.D., Neurologist Tuesday, March 5, 2013 9:30 p.m. –10:30 p.m. EST/ 6:30 p.m. – 7:30 p.m. PST Adapting to Changing Mobility Needs Patty Bobryk, MHS, PT, MSCS, ATP Orlando Health, MS Comprehensive Care Center of CentralFlorida Monday, March 11, 2013 9:30 p.m. –10:30 p.m. EST/ 6:30 p.m. – 7:30 p.m. PST Adjusting to Living with MS Lara Stepleman, Ph.D. Director of Psychological Services for theAugustaMS Center Tuesday, March 19, 2013 9:30 p.m. –10:30 p.m. EST/ 6:30 p.m. – 7:30 p.m. PST To join: call 1-888-550-5602 Code 23441168. To view the presentation: http://ccc.spiderphone.com/23441168.http://www.msfocus.org/news-details.aspx?newsID=2412013-02-27T00:00:00-08:00Obese girls are at greater risk of developing MS, according to a new study. Researchers looked at body mass index (BMI) data from more than 900,000 children from the Kaiser Permanente Southern California Children's health study. Seventy-five of those children and adolescents between the ages of 2 and 18 were diagnosed with pediatric MS. More than 50 percent of them were overweight or obese (compared to 36.6 percent of the children who did not have MS) and the majority of them were girls. According to the study, the MS risk was more than one and a half times higher for overweight girls, almost two times higher in moderately obese girls, and almost four times higher in extremely obese girls. The association between weight and MS was only seen in girls, and was greater in Hispanic girls in particular. "In our study, the risk of pediatric MS was highest among moderately and extremely obese teenage girls, suggesting that the rate of pediatric MS cases is likely to increase as the childhood obesity epidemic continues," the authors wrote, noting that over the last 30 years, childhood obesity has tripled. “Menstrual cycle levels of female sex steroids have been shown to increase the risk of MS in animal models by promoting inflammatory mediators of autoimmunity,” explained study author Dr. Annette Langer-Gould, of the Kaiser Permanente Southern California Department of Research & Evaluation inPasadena. Fat tissue also produces these pro-inflammatory mediators. “We speculate that these extremely obese peri-pubescent girls are getting a double dose of pro-inflammatory mediators and thereby increasing their risk of MS and MS-like illnesses,” she said. The study found no association in boys, but the authors suspect that the effects of obesity may show up later in men, as they reach young adulthood. Even though pediatric MS remains rare—1.7 in 100,000 kids—parents of obese teenagers should pay attention to symptoms such as collapsing weakness in the legs after modest exertion, pain and loss of vision in one eye, tingling and numbness, limb weakness and loss of bladder control. If these symptoms arise, the child should be examined by a neurologist, Langer-Gould said. The study was published in the online issue of the journal Neurology http://www.msfocus.org/news-details.aspx?newsID=2402013-01-31T00:00:00-08:00An injectable treatment for relapsing-remitting MS (RRMS) designed to significantly reduce the dosing schedule typical of standard interferon drugs has shown favorable results in a late-stage clinical trial, according to drug manufacturer Biogen Idec. The phase III ADVANCE study evaluated the efficacy, safety, and tolerability of peginterferon beta-1a (also known as Peg-Avonex) compared to placebo at one year. More than 1,500 people with RRMS participated in the study and were divided into arms of dosing every two weeks or dosing every four weeks. Results showed that Peginterferon beta-1a: Reduced the risk of 12-week confirmed disability progression as measured by the Expanded Disability Status Scale (EDSS) by 38 percent in both dosing arms. Reduced the proportion of patients who relapsed by 39 percent in the once every two-week dosing arm and by 26 percent in the once every four-week dosing arm. Reduced the number of new or newly enlarging T2-hyperintense lesions on brain MRI scans by 67 percent in the once every two-week dosing arm and by 28 percent in the once every four-week dosing arm. Adverse events (AEs), serious adverse events (SAEs) and discontinuations due to AEs were similar across both dose groups in ADVANCE and both dosing regimens showed favorable safety and tolerability profiles. The overall incidence of SAEs and AEs was similar among the peginterferon beta-1a and placebo groups. The most common SAE was infections, which was balanced across all treatment groups. The most commonly reported AEs with peginterferon beta-1a treatment were redness at the injection site and influenza-like illness. Biogen said the results "support peginterferon beta-1a as a potential treatment dosed every two weeks or every four weeks for relapsing-remitting multiple sclerosis." Biogen said it plans to submit the drug for approval in 2013. http://www.msfocus.org/news-details.aspx?newsID=2392013-01-24T00:00:00-08:00Rebif Rebidose (interferon beta-1a), a single-use auto-injector for the self-administration of Rebif®, has been approved by the U.S. Food and Drug administration for the treatment of relapsing forms of MS, according to EMD Serono. A statement issued by the company said that it anticipates making the product available in a monthly pack in 22 micrograms and 44 micrograms, and in a titration pack. It is expected to be available in theUSin early 2013. Approval was based on a 12-week phase IIIb multicenter, open-label, single-group study looking at ease of use, patient satisfaction and acceptability, and functional reliability, according to the statement. The 109 participants, aged 18 to 65 years, had relapsing MS meeting McDonald criteria and had already been treated consistently with 44 micrograms, three times weekly, for 12 weeks or more before screening. Patients then completed a user trial questionnaire at weeks six and 12. The primary endpoint was the proportion of participants rating the auto-injector as "easy to use" or "very easy to use" at week 12. Safety evaluation included the incidence of serious adverse events. Results showed that "the majority of patients found the device easy to use," the statement notes. With this approval, there are now three delivery options for Rebif: prefilled syringes, Rebiject II, and Rebif Rebidose. Users should demonstrate competency in all aspects of the injection before independent use, and people with severe neurologic deficits should not self-administer injections without assistance from a trained caregiver. http://www.msfocus.org/news-details.aspx?newsID=2382013-01-04T00:00:00-08:00See Alaska by sea this June 2013! The Multiple Sclerosis Foundation is once again offering an incredible opportunity to visit one of the most exciting and scenic areas in North America aboard Celebrity Cruise’s finest ship, Solstice. So much to do and see! Come with us as we navigate the Tracy Arm Fjord and see the splendor and beauty from your vantage point aboard the ship. You can see the Alaskan wildlife as we visit Juneau, gaze out the window at the scenic views in Skagway as you take the accessible White Pass and Yukon Route Railway, or stroll through Ketchikan, Alaska’s first city and the “Salmon Capital” of the world. And that’s just to name a few of the exciting activities on this voyage. In addition to the amazing sites and scenery, don’t forget about our variety of motivating, educating, and empowering programs presented by MS experts. These include: Deborah Backus, Ph.D. – “Avast ye, Matey – Rehabilitation in MS: What Works?” Emily Cade – “Navigating the Treacherous Waters of Health and Disability Insurance” and “Life Care Planning or Walk the Gang Plank!” Gerald Bilsky, M.D. – “Coordinating Patient Care for Smooth Sailing” and “The Rough Seas of Spasticity.” Tim West, M.D. – “What’s in the Pipeline (Not the Alaskan Pipeline)?” Ben Thrower, M.D. – “Relapses: Watch Out for the Iceberg!” Daniel Kantor, M.D. – “Depression: Riding Out the Tsunami.” Gail G. Gibson, Ph.D., PG, CPG, REP – “The Changing Face of Alaska.” The MSF Cruise for a Cause 2013 departs from Seattle, WA on June 14th and returns June 21st, 2013. Along the way we will be visiting: Ketchikan, Alaska; Tracy Arm Fjord, Alaska; Juneau, Alaska; Skagway, Alaska; Alaska Inside Passage and Victoria, British Columbia. For more information contact the Multiple Sclerosis Foundation at 800-225-6495 or visit http://www.msfocus.org/Cruise-for-a-Cause.aspx. To obtain pricing information or to book your trip, please call Gabriela Aragon at Aragon Travel at 800-659-0081 or email gabriela@aragontravel.com. MSF Cruise for a Cause 2013 is an experience of a lifetime where you can visit with old friends and make new ones. We look forward to sailing with you! http://www.msfocus.org/news-details.aspx?newsID=2372012-12-28T00:00:00-08:00Learn about promising advances in pediatric MS and have your questions answered by experts from Stony Brook Medicine on December 13 at 7:00 p.m. Eastern. This teleconference will be presented by Lauren B. Krupp, MD. Dr. Krupp is a Professor of Neurology, Psychology and Pediatrics at Stony Brook Medicine, and is an internationally recognized expert in multiple sclerosis. She is the Director of the Lourie Center for Pediatric MS at Stony Brook Children’s Hospital and is the Co-Director of the adult MS Comprehensive Care Center at Stony Brook Medicine. She is the principal investigator for numerous research studies on MS. To register for this event and obtain the conference code, call 631-444-7832.http://www.msfocus.org/news-details.aspx?newsID=2362012-11-30T00:00:00-08:00A biodegradable nanoparticle has proven to be the perfect vehicle to stealthily deliver an antigen that tricks the immune system into stopping its attack on myelin and halt a model of relapsing-remitting multiple sclerosis in mice, according to new research. The nanoparticles are made of the same material used to make surgical sutures that dissolve harmlessly in the body (and are FDA approved). The potential treatment developed by researchers at the Feinberg School of Medicine at Northwestern University in Chicago works by “introducing” myelin to the body’s immune cells (T-cells) at the same time they are “meeting” healthy tissue, thereby educating the immune cells to leave the myelin alone. In the study, researchers attached myelin antigens to the nanoparticles and injected them intravenously into the mice. The particles entered the spleen, which filters the blood and helps the body dispose of aging and dying blood cells. There, the particles were engulfed by macrophages, a type of immune cell, which then displayed the antigens on their cell surface. The immune system viewed the nanoparticles as ordinary dying blood cells and nothing to be concerned about. This created immune tolerance to the antigen by directly inhibiting the activity of myelin responsive T cells and by increasing the numbers of regulatory T cells which further calmed the autoimmune response. Though trials in humans are likely two years away, according to estimates, the procedure has generated hope that one day treatment options will include nanoparticle therapy. Nanoparticles have many advantages; they can be readily produced in a laboratory and standardized for manufacturing. They would make the potential therapy cheaper and more accessible to a general population. "The key here is that this antigen/particle-based approach to induction of tolerance is selective and targeted. Unlike generalized immunosuppression, which is the current therapy used for autoimmune diseases, this new process does not shut down the whole immune system," said Christine Kelley, National Institute of Biomedical Imaging and Bioengineering director of the division of Discovery Science and Technology at the National Institutes of Health, which supported the research. The approach may also be used to treat any autoimmune disease. For diabetes, little bits of pancreatic beta cells could be attached to the nanoparticles. For a food allergy, the part of the food that causes the allergic response could be attached. The study was published in the journal Nature Biotechnology. http://www.msfocus.org/news-details.aspx?newsID=2352012-11-19T00:00:00-08:00A new diagnostic tool being developed to identify MS in the early stages has continued to perform well in a series of clinical studies and the process of validating these results in a prospective, multi-site clinical trial has begun. MSPrecise™ is a sequencing assay that analyzes changes in key genes involved in the adaptive immune system of people being evaluated for MS. In clinical studies it has outperformed the specificity of the current standard of care for cerebral spinal fluid (CSF) analysis by almost two to one with no loss of sensitivity, according to product developer DioGenix. MSPrecise measures DNA mutations found in rearranged immunoglobin genes in B cells isolated from cerebrospinal fluid (CSF). These mutations are a result of the adaptive immune system's response to a perceived challenge to the patient. The changes in the B cell DNA correspond to the production of diverse antibody libraries aimed at fighting the perceived foreign invader. The specific mutational changes observed in people with MS are different from those observed in people with similar neurological diseases because the antigens recognized by the antibodies are different, results from DioGenix's clinical studies suggest. The current diagnostic standard of care for MS includes CSF analysis using the oligoclonal banding test, which detects immunoglobin G proteins that indicate an immune response within the CNS. Because the oligoclonal banding test yields a high rate of false positive results, confident diagnosis also requires a comprehensive set of clinical tests including magnetic resonance imaging and, in certain cases, visual evoked potentials. Due to the variability of symptoms between patients and the lack of a definitive test, it has been estimated that the misdiagnosis rate for MS is higher than any other immune-mediated neurological disease, DioGenix reports. MSPrecise would augment clinicians' current standard of care for the diagnosis of MS, providing measurement of changes in B cell DNA as compared to merely the presence of immunoglobin G proteins in the CSF. This novel method of measuring changes in human immunity during the early stages of the disease may also be able to discern individuals whose disease is more progressive and requires more aggressive treatment. In a recently completed study, DioGenix analyzed CSF samples that were retrospectively and prospectively collected from people with MS and other neurological diseases, as well as healthy controls. CSF from two cohorts of approximately 40 to 45 patients each were compared; the first cohort included people with a confirmed diagnosis of relapsing remitting MS, and the other cohort consisted of people with other neurological diseases that mimic the presentation of MS and healthy controls. Subjects with MS had MSPrecise scores that were statistically significantly higher compared to both healthy controls and patients with other neurological diseases. "MSPrecise quantifies specific molecular changes in CSF-derived B cells and results generated to date indicate that it is more accurate than oligoclonal banding. The DioGenix assay bridges the divide between immunology research and bedside care using cutting-edge technology," said Dr. Michael Racke, Professor and Chairman of Neurology at The Ohio State University. "This represents an exciting advance in our efforts to more accurately diagnosis patients with multiple sclerosis and it is based on clinically relevant biomarkers of immune system response." http://www.msfocus.org/news-details.aspx?newsID=2342012-11-08T00:00:00-08:00Blocking a certain enzyme in the brain may help repair the brain damage associated with MS and certain other neurological disorders, research from Oregon Health & Science University (OHSU) suggests. The enzyme, called a hyaluronidase, is highly elevated in brain lesions of people with MS and in the nervous systems of animals with an MS-like disease, according to the OHSU research team. The team is led by Larry Sherman, Ph.D., who is a professor of cell and development biology at OHSU and a senior scientist in the Division of Neuroscience at the Oregon National Primate Research Center. "What this means is that we have identified a whole new target for drugs that might promote repair of the damaged brain in any disorder in which demyelination occurs,"Sherman said. "Any kind of therapy that can promote remyelination could be an absolute life-changer for the millions of people suffering from MS and other related disorders." Sherman cautioned that the discovery does not necessarily signal a cure for MS. Many other factors can contribute to the problems associated with MS and other demyelinating diseases, he said. But discovering the actions of this enzyme - and finding a way to block it- "could at the very least lead to new ways to promote the repair of brain and spinal cord damage either by targeting this enzyme alone or by inhibiting the enzyme in conjunction with other therapies.” The researchers found that by blocking hyaluronidase activity, they could promote myelin-forming cell differentiation and remyelination in mice with MS-like disease. Most significantly, the drug that blocked hyaluronidase activity led to improved nerve cell function. Sherman's lab has been studying MS and other conditions where myelin is damaged for more than 14 years. In 2005, he and his research team discovered that a sugar molecule, called hyaluronic acid, accumulates in areas of damage in the brains of humans and animals with demyelinating brain and spinal cord lesions. Their findings at the time suggested that hyaluronic acid itself prevented remyelination by preventing cells that form myelin from differentiating in areas of brain damage. The new study shows that the hyaluronic acid itself does not prevent the differentiation of myelin-forming cells. Rather, breakdown products generated by a specific enzyme that chews up hyaluronic acid - a hyaluronidase - contribute to the remyelination failure. The next step is to develop drugs that specifically target this enzyme. "The drugs we used in this study could not be used to treat patients because of the serious side effects they might cause," said Sherman. "If we can block the specific enzyme that is contributing to remyelination failure in the nervous system, it would likely cause few, if any, side effects." Sherman and other researchers at the ONPRC are uniquely positioned to test newly developed drugs for their safety and effectiveness in nonhuman primates at ONPRC that spontaneously develop an MS-like disease. If they find a drug that is effective in these monkeys, they will be in a good position to test such drugs in patients. The study was published in the online edition of the Annals of Neurology.http://www.msfocus.org/news-details.aspx?newsID=2332012-11-05T00:00:00-08:00Two large Phase III studies for the oral medication BG-12 (dimethyl fumarate) have demonstrated significant and clinically meaningful reductions in relapses and brain lesions in people with relapsing-remitting MS (RRMS) compared with placebo. The studies, reported in The New England Journal of Medicine, also showed a benefit in slowing disease progression. In the new studies, called Define and Confirm, participants were randomized into two groups, taking 240 milligrams of BG-12 either twice or three times a day. Those in a third group took a placebo. The combined results showed that the drug reduced the relapse rate by about 50 percent. There was minimal difference between the two-times-a-day and three-times-a-day regimens. Taking BG-12 twice a day reduced the number of new or newly enlarging brain lesions by 71 percent to 99 percent, depending on the type of lesion and the study. The Define study found a statistically significant 38 percent reduction in the progression to disability. The most frequent side effects were a temporary flushing and warm feeling and gastrointestinal symptoms including nausea, diarrhea, cramping and vomiting. Though both types of side effects were common, they tended to diminish after the first few weeks of use and were tolerated by most participants. BG-12, which is being developed by Biogen Idec, is an anti-inflammatory that works by protecting nerves against injury. It is a fumaric acid, very similar to one widely used in Germanyfor the treatment of psoriasis. Researchers are hoping that the U.S. Food and Drug Administration will make a decision on the new drug application for BG-12 by the end of the year. “BG-12 represents a potentially exciting addition to the toolbox of MS therapies. The DEFINE and CONFIRM trials have shown this drug to be safe and effective in people with relapsing-remitting MS,” says Ben Thrower, M.D., Senior Medical Advisor for the Multiple Sclerosis Foundation. “So, where will we use BG12? I see BG12 as a first-line therapy to be considered in people who are newly diagnosed or who are struggling with an injectible MS therapy due to side effects. If a person is doing well with their current injectible therapy, we will need to consider the risks and benefits of switching to BG12.” Dr. Thrower adds, “A more challenging group will be those looking at switching from Tysabri to BG12. Very few study subjects in the CONFIRM and DEFINE trials were moving from Tysabri to BG12, so we have very little data to rely on. For people who are JC virus antibody positive, we will need to look at the risks and benefits of staying on Tysabri versus switching to BG12. To sum it all up, I'm excited about BG12 and think it may be a good fit for many of our patients.”http://www.msfocus.org/news-details.aspx?newsID=2322012-09-21T00:00:00-07:00The U.S. Food and Drug Administration has approved Aubagio® (teriflunomide), a once-daily tablet, to treat relapsing forms of MS. The therapy is expected to be available for prescription by October 1, 2012 in theU.S. “In a clinical trial, the relapse rate for patients using Aubagio was about 30 percent lower than the rate for those taking a placebo,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. The most common side effects of Aubagio experienced by participants in clinical trials include diarrhea, abnormal liver tests, nausea, and hair loss. The drug contains a Boxed Warning to alert prescribers and patients to the risk of liver problems, including death, and a risk of birth defects. Physicians should do blood tests to check liver function before a patient starts taking Aubagio and periodically during treatment. Also included in the Boxed Warning is an alert noting that, based on animal studies, the drug may cause fetal harm. For this reason, Aubagio is labeled as Pregnancy Category X, which means women of childbearing age must have a negative pregnancy test before starting the drug and use effective birth control during treatment. Aubagio will be dispensed with a patient Medication Guide that provides important instructions on its use and drug safety information. Aubagio is made by Bridgewater, N.J.-based Sanofi Aventis. Physicians and people with MS can contact Genzyme for information about Aubagio and patient support programs by calling: 1-855-676-6326, or visit the company’s Website: www.MSOnetoOne.com. http://www.msfocus.org/news-details.aspx?newsID=2312012-09-13T00:00:00-07:00The herbal supplement ginkgo biloba did not improve cognitive function in people with MS in a recent research study involving 120 people at the LSU Health Sciences Center in New Orleans. This study followed up on a promising earlier small study by Dr. Jesus Lovera, assistant professor of neurology, and his colleagues that had shown improvement in cognitive function with ginkgo biloba in people with MS. Some studies have also shown improvement after treatment with ginkgo biloba in people with Alzheimer's disease. "Ginkgo biloba supplements are frequently used by people with MS. Ginkgo appeared beneficial in a prior small pilot study we had done," says Dr. Lovera. The researchers wanted to conduct a larger, more robust study to determine the validity of the preliminary results. One hundred twenty people with MS were randomized to either the group treated with 120 mg of ginkgo biloba twice a day, or to the group taking matching placebo tablets. Participants were treated for 12 weeks and then underwent a battery of cognitive tests. Participants and their families also answered standardized questionnaires about their cognitive function and social integration. The tests found that there were no statistically significant improvements in cognitive function between the two groups. "Unfortunately we did not see any improvement with ginkgo in this new study," notes Dr. Lovera. "Several drugs such as Namenda and Aricept that work for people with Alzheimer's have been tested without success in people with MS. Unfortunately now ginkgo is added to the list of therapies thought to be effective in Alzheimer's disease that failed to improve cognitive performance in MS." While the study provides solid evidence, the researchers noted several limitations. Participants were treated for only 12 weeks and perhaps that was not long enough to modify the disease. The median duration of MS was 20 years, and it is possible that ginkgo may improve cognitive function earlier in the MS disease process. It is also possible that there could have been a positive effect in participants with more severe impairments than those in this study. Additional functional assessments that measure performance in real-life situations may also have detected an effect that was missed by limiting the outcome measures to cognitive tests and questionnaires. Cognitive impairment affects 40-60% of people with MS, most commonly affecting their processing speed, memory, and executive skills. The research findings were published online ahead of print in Neurology. http://www.msfocus.org/news-details.aspx?newsID=2302012-09-12T00:00:00-07:00A new study recently reported in the Journal of the American Medical Association suggests that the interferon beta drugs widely used in treating relapsing-remitting MS may have little or no effect on a person’s progression to disability. However, the study’s senior author, Helen Tremlett, an associate professor of neurology at the University of British Columbia, cautioned that the study does not show that interferon beta is useless. “These drugs were licensed because they reduce relapse and have a better outcome with lesions,” she says. “That has not changed.” Interferon beta drugs currently on the market include Betaseron®, Avonex®, Rebif®, and Extavia®. Researchers at the University of British Columbia prospectively collected data on 868 people with MS treated with interferon beta, comparing them with 1,788 people who never took the drug. Using a well-validated scale, they found that those who took interferon beta were no less likely to suffer long-term disability than those who took none. Previous studies have found that interferon beta does prevent disability, but the authors point out that many of them were marred by methodological problems — the use of control groups too ill to start medication, for example — that this study avoided. At the same time, they acknowledge certain weaknesses of their own study, in particular the problem that people who take no medicine are also likely to be among those who are the least ill and therefore least likely to become disabled in any case. But after controlling for sex, age at onset, disease duration, relapse rate and other factors, they could find no association between taking interferon beta and any reduction in progression to disability. Relapses and brain lesions do not, apparently, drive disability, Dr. Tremlett said. “There may be other processes at work,” she added. “In an ideal world, we want drugs that target whatever is driving long-term disability. We need other drugs aiming at other targets in the brain.” MSF Senior Medical Advisor Ben Thrower, M.D., notes that in addition to contradicting earlier studies, “This study also seems to contradict what we see in real life. Most healthcare providers who work with MS would argue that beta interferons seem to have a slowing effect on disability progression in the clinic.” Another factor to consider, according to Dr. Thrower, is whether disability is being measured appropriately. “Most studies still use the EDSS to measure disability. This is a relatively crude measure that is very heavily weighted towards measuring walking ability. Cognitive dysfunction and fatigue are the two most vocationally-limiting symptoms seen with MS and are not measured well by the EDSS,” he says. Additionally, he says, the statement that relapses and MRI brain lesions have no effect on disability is controversial. While it is true that disability can worsen in progressive forms of MS without relapses or new MRI lesions, other studies have shown an association between new lesions on MRI and/or relapses and the risk of disability. ”The bottom line is that while this study is a little discouraging, it should not mean that we give up on a whole class of drugs for helping manage MS, “Dr. Thrower says. The study was supported by grants from the Canadian Institutes of Health Research and the National Multiple Sclerosis Society. The British Columbia Multiple Sclerosis database has been funded from those sources and also by an unrestricted grant from Donald Paty, MD, of theUniversityofBritish Columbia, and the MS/MRI Research Group. http://www.msfocus.org/news-details.aspx?newsID=2222012-07-18T00:00:00-07:00Reserve your spot now at www.mscando.org/multiple-sclerosis-programs/webinar-series/register July 10, 2012: 8:00 – 9:00 p.m. Eastern Standard Time Cognitive Changes: Recognizing and Meeting the Challenges Presented by Can Do MS Programs Consultants: Janet DeClark, MA, CCC-SLP and Deborah Miller, PHD, LISW This multi-disciplinary webinar will explain how to recognize cognitive challenges and share strategies to meet the challenge of cognitive issues. August 14, 2012: 8:00 – 9:00 p.m. Eastern Standard Time Emerging Therapies in MS Presented by Can Do MS Programs Consultant: Randall Schapiro, MD, FAAN This multi-disciplinary webinar will discuss emerging therapies in the treatment of multiple sclerosis. September 11, 2012: 8:00 – 9:00 p.m. Eastern Standard Time In the Kitchen with MS. Presented by Can Do MS Programs Consultants: Denise Nowack, RD and Cindy Gackle, OTR/L, MSCS This multi-disciplinary webinar discusses nutrition and adaptive tips and tools to use in the kitchen. http://www.msfocus.org/news-details.aspx?newsID=2182012-06-28T00:00:00-07:00The United States Supreme Court has upheld the constitutionality of the Patient Protection and Affordable Care Act. This ruling will have a significant, positive impact on many, including the millions of Americans affected by MS. The Patient Protection and Affordable Care Act may benefit people with MS in a number of ways. Some significant changes include: Prohibition of coverage denials based on pre-existing conditions: Too many people living with MS had been routinely denied insurance after receiving their diagnosis, preventing them from getting the care they need. This prohibition, which will fully come into effect in 2014, will ensure better access to coverage for those with MS. Prohibition of lifetime limits: Routine, often costly care is needed to manage MS. This may cause those living with severe forms of the disease to reach their lifetime limit early in life. Elimination of that limit was critically important for continued care. Prohibition of rescissions: The Act eliminates the practice known as “post-claims underwriting” that resulted in the cancellation of policies once an individual’s MS was discovered by the insurance companies. Elimination of annual limits: Similar to lifetime limits, many patients reach their annual limit of coverage because of the cost of care for MS. These arbitrary limits should not prevent those in need from receiving care. Extension of parent’s insurance to 26: Many people with MS are diagnosed in their 20s and may still be in school or lacking a full time job to help pay for their care. This provision ensures that they can continue coverage under their parent’s policy. Closing the Medicare Part D Coverage Gap: Disease Modifying Therapies for someone with MS can cost as much as $4,000 per month, which is out of reach for the average American; therefore, gradually closing the coverage gap has provided financial relief for those who depend on Medicare for prescription coverage. Pathway for Biosimilars: The law provides a pathway for biosimilars, which provides some hope of lower cost therapies in the future. The FDA had recently indicated it would not have pursued this pathway without the legislative mandate therefore, it will continue to be developed – which is good news for anyone who uses biologic therapies. Although many people with MS have health care coverage, 70 percent of those with health insurance still struggle with the cost of health care and 30 percent are forced to spend less on food, heat, utilities, and other necessities in order to afford their health care. Those without access to private insurance and who do not qualify for public programs are often priced out of the market, as individual plans can be prohibitively expensive. On average, the financial impact of living with MS is $69,000 per year, and more than half of this amount consists of direct health care costs. Unlike some other diseases, MS is a lifelong illness – typically diagnosed between the ages of 20 and 30s, prime career and family building years. Because of the high cost and complications that can be associated with the disease. http://www.msfocus.org/news-details.aspx?newsID=2192012-06-28T00:00:00-07:00A recent study at Oxford University in England and published in Annals of Neurology, has identified a gene that causes vitamin D deficiency, a condition suspected of having a role in the development of MS. The study examined the DNA of a group of people with MS who also have a large number of family members with the disease. All the DNA samples showed a distortion of the CYP27B1 gene which controls vitamin D levels in the body. And in a few rare cases where the DNA showed two copies of the distorted gene, the person was found to have a genetic form of rickets caused by vitamin D deficiency as well as MS. The cause of myelin damage related to MS is still hotly debated: some believe it to be an autoimmune disease while others cite viruses or the environment as the culprit. There is growing evidence however of a correlation between MS and vitamin D deficiency. Epidemiological studies also show that populations closer to the equator and the sun, have far fewer case of MS than populations closer to the north or south poles. Researchers at Oxford University have now taken this premise a step further by showing that vitamin D deficiency and therefore possibly MS could have a genetic cause. Despite this pivotal link, not all people with vitamin D deficiency develop MS. More research is needed to fully understand why. However, a distortion of the CYP27B1 gene is increasingly apparent in MS cases and it’s possible that the gene generates other, yet undetected, complications that lead to the disease—such as genetically caused rickets. “Although vitamin D deficiency doesn’t always cause MS, it unveiled a critical genetic source that could be causing other problems that lead to MS,” says Jeffrey Epstein, whose foundation partially supported the study. “Even if we don’t understand all of the implications of that gene’s distortion, research can focus on gene therapy, and that will accelerate a cure.” The study was partly funded by the National Multiple Sclerosis Society, The Wellcome Trust and the support of science investor, Jeffrey Epstein and The Jeffrey Epstein VI Foundation. http://www.msfocus.org/news-details.aspx?newsID=2172012-06-18T00:00:00-07:00Women with MS who undergo in vitro fertilization therapy are more likely to suffer a relapse, according to the results of a small new study. The use of synthetic hormonal chemicals, such as gonadotropin, during fertility treatments may be to blame for the increased relapse rate, the study authors suggested. They said women with MS should be warned about their greater risk for relapse following in vitro fertilization, particularly if the treatment is unsuccessful. The study by researcher David-Axel Laplaud of INSERM (a French public research institution) and colleagues was published online June 11 in the Journal of Neurology, Neurosurgery and Psychiatry .Previous research suggests that sex-hormone therapy and pregnancy affect the MS relapse rate, according to a journal news release. To determine if the synthetic hormonal treatments used during assisted reproduction also played a role in the increased risk for relapse, researchers examined 32 women with MS who underwent in vitro fertilization at 13 French university hospitals over the course of 11 years. Overall, the women received 70 in vitro fertilization cycles. The study found that 26 relapses occurred in the three months after the procedures. Of these, 48 involved gonadotropin-releasing hormone (GnRH) agonists (which activate the hormone), and 19 included GnRH antagonists (which block the hormone). These synthetic chemicals are designed to control the release of natural hormones needed to trigger a woman's ovaries and uterus to prepare for a pregnancy. Women who underwent in vitro fertilization were 60 percent more likely to experience a relapse during the three months that followed. Those odds rose to 71 percent in the two months following the therapy, the researchers noted. Risk of a relapse was linked to the use of GnRH agonists, not antagonists. Relapse among the women with MS was also greater when the attempts at becoming pregnant were unsuccessful, the study found. Of the 70 procedures, 49 failed to produce a pregnancy. Among these women, the risk of relapse almost doubled in the three months following in vitro fertilization compared to the three months before. The stress of in vitro fertilization itself could also increase the risk of relapse for women with MS, the researchers pointed out. While the study found an association between in vitro fertilization and MS relapses, it did not prove a cause-and-effect relationship. http://www.msfocus.org/news-details.aspx?newsID=2162012-06-14T00:00:00-07:00Applications for Lemtrada™ (alemtuzumab), a potential therapy for MS, have been submitted by Genzyme Corp. to both the U.S. Food and Drug Administration and to European regulators. The potential MS therapy for relapsing MS is already approved to treat leukemia under the name Campath®, and Genzyme executives called results from a second Phase III trial for Lemtrada, released earlier this year, “unprecedented.” Genzyme's clinical development program for Lemtrada included two Phase III studies in which results for Lemtrada were superior to Rebif(R) (high dose subcutaneous interferon beta-1a) on clinical and imaging endpoints, including a reduction in relapse rate. In addition, as presented at the 2012 American Academy of Neurology meeting, some patients with pre-existing disability treated with Lemtrada in the CARE-MS II trial were more than twice as likely to experience a sustained reduction in disability over two years than patients treated with Rebif. Side effects of Lemtrada include potential autoimmune illnesses, including thyroid disorders and disorders in which the immune system attacks blood platelets, which can cause bleeding. The drug is given by daily infusion for five days, and then daily infusion for three days, 12 months later. http://www.msfocus.org/news-details.aspx?newsID=2152012-06-13T00:00:00-07:00The 2012 European Neurological Society Meeting was held this year in Prague, Czech Republic and Dr. Daniel Kantor, President of the Florida Society of Neurology and medical advisor to the MSF was on the scene. Click below to watch a series of videos covering the event. http://www.msfocus.org/news-details.aspx?newsID=2142012-06-12T00:00:00-07:00The U.S. Food and Drug Administration (FDA) is alerting people with MS to the risks of serious injuries and death associated with certain procedures to treat chronic cerebrospinal venous insufficiency (CCSVI). The benefits of these experimental procedures, commonly known as “liberation therapy” or the “liberation procedure” have not been proven, says the FDA, and their promotion as a treatment for MS may lead people with the disease to make treatment decisions without being aware of the serious risks involved. The FDA’s announcement is also intended to notify physicians and clinical investigators planning or conducting clinical trials using medical devices to treat CCSVI that they must comply with FDA regulations for investigational devices. The “liberation procedure” uses balloon angioplasty devices or stents to widen narrowed veins in the chest and neck. However, the FDA has learned of cases involving death, stroke, detachment, and migration of the stents, as well as damage to the treated vein, blood clots, cranial nerve damage and abdominal bleeding associated with the experimental procedure. Balloon angioplasty devices and stents have not been approved by the FDA for use in treating CCSVI. Some researchers believe that CCSVI, which is characterized by a narrowing (stenosis) of veins in the neck and chest, may cause MS or may contribute to the progression of the disease by impairing blood drainage from the brain and upper spinal cord. However, studies exploring a link between MS and CCSVI are inconclusive, and the criteria used to diagnose CCSVI have not been adequately established, according to the FDA. The FDA gave the following reasons for issuing the warning: There is no clear diagnostic evidence that CCSVI exists as a distinct clinical disorder or is linked to MS. Venous stenoses seen on imaging tests may be normal variants that do not cause any symptoms or disease, since they are sometimes seen in healthy people. The safety and effectiveness of using balloon angioplasty devices or stents in the internal jugular or azygos veins have not been established for any clinical condition; nor has the FDA approved the use of these devices in these veins. There is no clear scientific evidence that the treatment of internal jugular or azygos venous stenosis is safe in MS patients, impacts the symptoms of MS, changes the overall course of MS, or improves the quality of life for MS patients. It is possible that stent placement can worsen any venous narrowing. This is because further narrowing has been shown to sometimes occur within stents placed in veins, due to the body’s response to the implant. “Because there is no reliable evidence from controlled clinical trials that this procedure is effective in treating MS, FDA encourages rigorously-conducted, properly-targeted research to evaluate the relationship between CCSVI and MS,” said William Maisel, M.D., M.P.H., chief scientist and deputy director for science in the FDA’s Center for Devices and Radiological Health. “Patients are encouraged to discuss the potential risks and benefits of this procedure with a neurologist or other physician who is familiar with MS and CCSVI, including the CCSVI procedures and their outcomes.” Complications following CCSVI treatment can be reported through MedWatch, the FDA Safety Information and Adverse Event Reporting program. For more information visit www.fda.gov/Safety/MedWatch/HowToReport. In February 2012, the FDA sent a warning letter to a sponsor/investigator who was conducting a clinical study of CCSVI treatment without the necessary approval. The sponsor/investigator voluntarily closed the study. The FDA says it will continue to monitor reports of adverse events associated with “liberation therapy” or the “liberation procedure” and keep the public informed as new safety information becomes available. http://www.msfocus.org/news-details.aspx?newsID=2132012-05-10T00:00:00-07:00Date: Saturday, May 19th Event name: RIGHT NOW – A Live Satellite Broadcast Times: 11:00 am – 12:00 pm ET and 2:00 pm – 3:00 pm ET (Please note, the broadcast will air across all time zones, interested parties are encouraged to visit the program website or call the registration center to find local venue and time that fits their availability. Information listed below). Locations: There are 121 locations across the US that will be hosting live events. Interested parties are encouraged to visit www.MyMSNow.com or call 1-855-MS EVENT to find an event near them and register to attend. The broadcast will also be streamed over the web at www.MyMSNow.com. Please visit the website to register to view online.http://www.msfocus.org/news-details.aspx?newsID=2122012-05-04T00:00:00-07:00An updated Gilenya label provides further guidance to healthcare providers regarding treatment initiation with Gilenya in the United States. Additional prescribing information includes selection parameters to aid in the identification of candidates with relapsing forms of MS for Gilenya treatment. Novartis made the announcement after the medication was reviewed by The US Food and Drug Administration (FDA). The drug company notes that the prescribing information does not alter treatment management of people with MS currently taking Gilenya, unless treatment is stopped, and then a need to reinitiate occurs. The updated FDA label for Gilenya indicates that all patients initiating treatment with Gilenya should have an electrocardiogram (ECG) prior to the first dose of the medicine and after the six-hour first-dose observation period. Hourly measurement of blood pressure and heart rate are also advised. The label update in the U.S.for Gilenya recommends that people with certain pre-existing cardiac conditions or those taking certain medications at the same time would require overnight monitoring following administration of first dose of medication. It may be suggested that some people be evaluated by a specialist prior to starting Gilenya. Experience with the use of Gilenya in such people was limited in the pivotal clinical trials, according to Novartis. People who have discontinued Gilenya and want to go back on the medication should undergo the new recommended monitoring upon treatment re-initiation, according to the revised label. No one should make any changes to any medications they are taking, including Gilenya, without consulting his or her doctor. Gilenya is contraindicated in people with history or presence of certain cardiac conditions, including heart attack or stroke in the past six months, second- and third-degree AV block and other serious cardiac rhythm disturbances, and in people treated with certain anti-arrhythmic drugs. As of February 2012, approximately 36,000 people have been treated with Gilenya in clinical trials and in the post-marketing setting, Novartis reported. http://www.msfocus.org/news-details.aspx?newsID=2112012-04-24T00:00:00-07:00MSWorld, Inc. is covering the 2012 AAN (American Academy of Neurology) Meeting in New Orleans, LA with Dr. Daniel Kantor, President of the Florida Society of Neurology and medical advisor to the MSF. Video updates will be added below in chronological order; the newest updates are at the end. Check back throughout the week for new coverage! To learn more about MSWorld and the Coverage at this meeting, please go to: http://conferencecenter.msworld.org/ and click on the AAN graphic.http://www.msfocus.org/news-details.aspx?newsID=2092012-04-23T00:00:00-07:00In Lieu of Favors Donate to the MSF Are you a bride or groom in the midst of planning a wedding? If so, your wedding is an opportunity to help those in need. Recently, some industry heavy hitters agreed. They decided to create a call to action for couples to make donations to the Multiple Sclerosis Foundation in lieu of buying favors. World renowned photographer Angela Cappetta, supermodel Shannon Rusbuld, hair and makeup artist Mili Simon, and producer Amy Frances all have loved ones with MS. They used their sizable industry influence to create one of the most important fashion shoots in recent history. The goal: To raise awareness about this terrible disease. To learn more, visit www.fearlessms.org. Remember, your wedding can help those in need and set the example for future good works. http://www.msfocus.org/news-details.aspx?newsID=2102012-04-23T00:00:00-07:00The largest gamer tournament in the Southeastern United States is coming to South Floridaand has chosen the Multiple Sclerosis Foundation as a beneficiary for this exciting, day-long event. Buy your tickets now to support the MSF and enjoy a $5 discount. T​he South Florida Gamer Conference & Expo​​​​​​​​​​​​ is expected to draw hundreds of gamers from around the nation who will compete head-to-head in Madden 2012 and Call of Duty. ​The conference and expo will be held from 10:00 a.m. until 7:00 p.m. on July 14th, 2012, at the Palm Beach County Auditorium. In addition gaming action, the event will include music from six live bands and three deejays spinning the latest in dubstep and house music. There will be activities for non-gamers of all ages as well as silent auctions to benefit the MSF and other select charities. Ten food truck vendors will be on hand, serving from gourmet to contemporary cuisine to suit all tastes​. A VIP area will offer complimentary catering for breakfast through dinner, including an open bar serving beer and specialty wines. VIP ticket holders also gain access to video games not yet released to the general public, and a private deejay. To order your tickets go to the following link and enter code MSFLT for your $5 discount: http://www.wix.com/i58396/south-fl-gamer-conf#!home|mainPage. The MSF would like to thank T​he South Florida Gamer Conference & Expo for its generous contribution. The funds will go directly towards helping those with MS who are in need.http://www.msfocus.org/news-details.aspx?newsID=2082012-04-18T00:00:00-07:00A man who was taking Gilenya® and had a history of Tysabri® treatment has been diagnosed with progressive multifocal leukoencephalopathy (PML), a serious brain disease caused by an infection from the JC Virus (JCV). The man, who lives outside the U.S., is now “clinically stable”, according to Gilenya drug maker Novartis. Novartis said the PML diagnosis was confirmed in mid-March, approximately three and a half months after the man started on Gilenya. He had been off Tysabri for six weeks. Duration of Tysabri treatment had been 3.5 years and he had tested JCV antibody positive. Presence of the JCV antibodies and longer duration of Tysabri treatment, especially more than two years, have been identified as risk factors for developing PML. A third risk factor is treatment with an immunosuppressant medication prior to starting Tysabri. Symptoms signaling a relapse began a few weeks after starting on Gilenya, according to Novartis. No MRI was taken then, and the man received high dose steroids for five days with no improvement. When symptoms worsened about two months later, he received a MRI that showed lesions suspicious of PML. Further testing confirmed the PML diagnosis, Novartis said. "The current assessment is that Tysabri is the drug most likely associated with this case of PML," Novartis said in a statement. "However, a contribution of Gilenya to the evolution of this case can't be excluded." This is the first known case of PML in a person taking Gilenya, according to Novartis. No change in protocol is anticipated. Gilenya, which is currently the only oral MS drug on the market, has so far been approved in more than 55 countries, with more than 35,000 people receiving treatment. For more information contact 1-888-Now-Nova (452-0051).http://www.msfocus.org/news-details.aspx?newsID=2072012-04-16T00:00:00-07:00The largest gamer tournament in the Southeastern United States is coming to South Florida and has chosen the Multiple Sclerosis Foundation as a beneficiary for this exciting, day-long event. Buy your tickets now to support the MSF and enjoy a $5 discount. T​he South Florida Gamer Conference & Expo​​​​​​​​​​​​ is expected to draw hundreds of gamers from around the nation who will compete head-to-head in Madden 2012 and Call of Duty. ​The conference and expo will be held from 10:00 a.m. until 7:00 p.m. on May 26, 2012, at the West Expo Hall of the South Florida Fairgrounds, 9067 Southern Boulevard, West Palm Beach, Fla. 33411. In addition gaming action, the event will include music from six live bands and three deejays spinning the latest in dubstep and house music. There will be activities for non-gamers of all ages as well as silent auctions to benefit the MSF and other select charities. Ten food truck vendors will be on hand, serving from gourmet to contemporary cuisine to suit all tastes​. A VIP area will offer complimentary catering for breakfast through dinner, including an open bar serving beer and specialty wines. VIP ticket holders also gain access to video games not yet released to the general public, and a private deejay. To order your tickets go to the following link and enter code MSFLT for your $5 discount: http://www.wix.com/i58396/south-fl-gamer-conf#!home|mainPage. The MSF would like to thank T​he South Florida Gamer Conference & Expo for its generous contribution. The funds will go directly towards helping those with MS who are in need.http://www.msfocus.org/news-details.aspx?newsID=2062012-04-03T00:00:00-07:00New research suggests that pregnancy may decrease women's risk of developing multiple sclerosis. In an Austrailian study of 282 people with MS symptoms, having one pregnancy was associated with nearly halving the risk of developing MS symptoms compared to those who were never pregnant. Risk discreased even more with additional pregnancies, according to the study. Study author Anne-Louise Ponsonby, head of the environmental and genetic epidemiology and research group at Murdoch Children's Research Institute inMelbourne,Australia, and her research team reported they found an association between pregnancy and a lower risk of MS symptoms, not a direct cause-and-effect link. Previous research has found that pregnancy in women who already have MS is linked with lower rates of relapse. The researchers say this association may help explain why the incidence of MS in women has inched up over the past few decades, as more women delay pregnancy or have fewer babies or none at all. “In our study, the risk went down with each pregnancy and the benefit was permanent,” said Ponsonby. Researchers reviewed information about 282 Australian men and women between the ages of 18 and 59 who had a first diagnosis of central nervous demyelination, which means they had their first symptoms similar to MS but had not yet been diagnosed with the disease. They were compared to 542 men and women with no MS symptoms. For women, the number of pregnancies lasting at least 20 weeks and the number of live births were recorded. For men, the number of children born was recorded. The study found that women who were pregnant two or more times had a quarter of the risk of developing MS symptoms and women who had five or more pregnancies had one-twentieth the risk of developing symptoms than women who were never pregnant. There was no association between the amount of children and risk of MS symptoms in men. “The rate of MS cases has been increasing in women over the last few decades, and our research suggests that this may be due to mothers having children later in life and having fewer children than they have in past years,” said Ponsonby. The researchers couldn't say exactly why pregnancy may lower MS risk, but they speculated it could be the increase in estrogen during pregnancy or the effect pregnancy has on inflammatory genes involved in MS. The information may lead to future studies looking into hormonal treatment or other treatments that may alter the disease course. The study was published online in the journal Neurology.http://www.msfocus.org/news-details.aspx?newsID=2052012-03-08T00:00:00-08:00Whether you just want to listen in or ask questions, register now for these free and informative teleconferences: MS Treatments and Symptom Management Daniel Kantor, M.D., Neurologist Tuesday, March 13th, 2012 9:30 p.m. – 10:30 p.m. EST / 6:30 p.m. – 7:30 p.m. PST Sponsored by an educational grant from TEVA Neuroscience MS in the World of Work Phillip D. Rumrill, Ph.D., CRC Wednesday, March 21st, 2012 9:30 p.m. – 10:30 p.m. EST / 6:30 p.m. – 7:30 p.m. PST Urinary Tract Issues and Sexual Dysfunction in MS S. Ali Khan, Professor of Urology Wednesday, March 28th, 2012 9:30 p.m. – 10:30 p.m. EST / 6:30 p.m. – 7:30 p.m. PST To register call Gloria at 1-888-673-6287, Ext. 126http://www.msfocus.org/news-details.aspx?newsID=2042012-03-02T00:00:00-08:00“At Your Best with MS” is the MSF’s theme for the 2012 National Multiple Sclerosis Education and Awareness Month (NMSEAM), which starts today. The MSF chose this theme to encourage people with MS to do everything they can to maintain the best quality of life possible with the disease. Only you know how this may apply to your own life with MS, but for many people, being “At Your Best with MS” means adhering to medication plans, eating healthy, keeping fit, finding hobbies and interests that bring pleasure, developing a support network, maintaining good emotional heath, and continuing employment when possible. At times, these goals may seem overwhelming. Just do your best. You’ve likely heard that advice before, whether in school, at work, or on the sports field. It acknowledges that everyone has different abilities, and it is especially appropriate to remember that advice when coping with a disease as varied as MS. After all, if you apply yourself as much as possible to improve your quality of life, you can be confident that you are “At Your Best with MS.” As we journey through life, we discover that we do some things better than others. If we are lucky, we are able to nurture our given talents and use them to benefit ourselves or others. For the MSF’s 2012 Awareness Month Initiative we invite you to “Show us Your Best.” What do you do well? What skill or talent are you most proud of? Are you a great artist? Awesome dancer? Do you have a knack for motivating others? Maybe you are good at listening and being supportive. Perhaps you are best at planning and setting goals. So, “Show us Your Best” and tell us how you use “your best” to do one or more of the following: promote MS awareness and education, help others, and raise funds for the MS cause. We would also like to know how using your best skill or talent makes you be “At Your Best with MS.” As always, we encourage you to be creative in your submission: write a poem, short story, or an essay (no more than ** words); make a video or record a song; take a photograph or assemble a collage. Just do your best! The grand prize winner will be a cruise for two aboard the MSF’s Cruise for a Cause. Five honorable mentions will be awarded a gift cards. Submissions will be accepted through March 31st. Be sure to include your name, mailing address, phone number, and email address if you have one. Send your entry to Awareness Initiative, Multiple Sclerosis Foundation, 6520 N. Andrews Ave., Ft. Lauderdale, FL 33309. Or email them to awareness@msfocus.org. To learn more about NMSEAM and how you can get involved, and to order a MSF Awareness Kit, go to http://www.msfocus.org/national-ms-awareness-month.aspx. http://www.msfocus.org/news-details.aspx?newsID=2032012-03-01T00:00:00-08:00Biogen has announced it has submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for marketing approval of BG-12 (dimethyl fumarate), the company’s oral therapeutic candidate for the treatment MS. The regulatory submission was based on BG-12’s comprehensive development program, in which BG-12 demonstrated significant reductions in MS disease activity coupled with favorable safety and tolerability in the Phase 3 DEFINE and CONFIRM studies. Biogen Idec says there are plans to submit a Marketing Authorisation Application (MAA) for BG-12 to the European Medicines Agency (EMA) within the coming days. “The rapid submissions of our BG-12 regulatory packages, which integrated one of the largest placebo-controlled data sets for a filing in MS, reflect our commitment to bringing additional therapies to patients in need as quickly as possible,” says Douglas E. Williams, Ph.D., Biogen Idec’s executive vice president of Research and Development. “We anticipate hearing from regulatory authorities regarding the status and acceptance of our submissions within the next couple of months.” BG-12 (dimethyl fumarate) is an investigational oral therapy in late-stage clinical development for the treatment of relapsing-remitting MS (RRMS). BG-12 is the only currently known investigational compound for the treatment of RRMS that has experimentally demonstrated activation of the Nrf-2 pathway. In 2011, Biogen Idec announced positive data from DEFINE and CONFIRM, two global, placebo-controlled phase III clinical trials that evaluated 240 mg of BG-12, administered either twice a day or three times a day, for two years.http://www.msfocus.org/news-details.aspx?newsID=2022012-02-28T00:00:00-08:00The European Medicines Agency, the agency responsible for the scientific evaluation of medicines for use in the European Union, has undertaken a review of Gilenya following cases of serious cardiac events and death in patients who had recently started the medicine. As yet, there is not enough information to determine if Gilenya was the cause of these cases, which is why a review is underway. During the review, the agency has strengthened its recommendations for monitoring patients who receive the drug. The new guidelines are as follows: Before starting treatment with Gilenya, all patients should have their heart checked by ECG, a test that measures the electrical activity of the heart. After receiving the first dose of Gilenya, all patients should have their heart function continuously monitored by ECG for six hours. All patients should also have their blood pressure and heart rate checked every hour for six hours after the first dose. If patients develop any clinically relevant heart problem (such as bradycardia or atrioventricular block), doctors are advised to consider extending the monitoring period until it is resolved. These guidelines apply only within the European Union. FDA guidelines within the U.S. remain unchanged. Those being treated or planning to begin treatment who have questions can call Novartis, the drug's manufacturer, at 1-888-NOW-NOVA. http://www.msfocus.org/news-details.aspx?newsID=2012012-01-20T00:00:00-08:00As of December 2011, the Social Security Administration (SSA) now recognizes “malignant multiple sclerosis” – an acute form of MS – as a condition that qualifies for a “Compassionate Allowance” when considered for SSDI. According to the SSA website, “Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.” The National MS Society, whose experts testified at the SSA hearing for inclusion of malignant multiple sclerosis on the Compassionate Allowances list, reports that people with a diagnosis of “aggressive” or “advanced” MS will also qualify for the allowance. http://www.msfocus.org/news-details.aspx?newsID=2002011-12-19T00:00:00-08:00Novartis has confirmed that a person with MS died one day after taking the first dose of Gilenya; however, the exact cause of death has not been determined and it is too soon to know whether Gilenya played a role in the person’s death, representatives from the drug company said. The death occurred on Nov. 23rd. and it is the first reported within 24 hours of the first Gilenya dose in more than 28,000 people who have taken the drug, according to Novartis. After taking the initial dose of Gilenya on Nov. 22nd, the patient was monitored for the next six hours, as is recommended by the U.S. Food and Drug Administration (FDA), Novartis reported. Novartis said it has sent details of the case to the FDA and other regulatory authorities. Gilenya, the first oral pill for MS, was approved in the U.S. last year. The general information line for Novartis customers is 888-NOW-NOVA (669-6682).http://www.msfocus.org/news-details.aspx?newsID=1992011-12-12T00:00:00-08:00Another piece of evidence linking Vitamin D deficiency to MS has been reported by British and Canadian researchers who have pinpointed a rare genetic variant which causes reduced levels of vitamin D, Oxford University researchers along with Canadian colleagues at the University of Ottawa, University of British Columbiaand McGill University identified the mutated gene in parents of 35 children with MS and in each case the child had inherited the gene, the BBC has reported.The researchers looked for the gene variant in more than 3,000 families of unaffected parents with a child with MS, and found 35 parents who carried one copy of this variant along with one normal copy. Just one copy of the mutated gene from either parent affects a key enzyme that leads to lower levels of vitamin D. In every one of these 35 cases, their child with MS had inherited the mutated version of the gene, the researchers said."All 35 children inheriting the variant is like flipping a coin 35 times and getting 35 heads, entailing odds of 32 billion to one against," George Ebers, lead study author at Oxford University, said.While the cause of MS remains unknown, the current theory suggests that a combination of genetic predisposition, environmental factors such as exposure to sunlight and possibly some sort of trigger, such as a viral infection, interact in some way to start the development of MS. Scientists said this research strengthens the case for vitamin D being one potential contributory cause of MS.http://www.msfocus.org/news-details.aspx?newsID=1982011-12-09T00:00:00-08:00Recent analysis of brain tissue of early MS patients obtained through biopsies has added more evidence for the theory that MS may begin in the outer layer of the brain and work its way into the deep interior. This new premise suggests that gray matter, the outer covering of the brain called the cortex, and the fluid that surrounds and cushions it, is where MS originates, not in the bulky white matter that composes most of the brain's core. In addition to showing that the cortex is involved early in the disease, researchers speculate it may even be the initial target of the disease. "We already recognized before this study that the cortex -- the superficial layer where cells control memory, attention, and other key pathways in the nervous system -- was involved in MS. But most of what we knew came from autopsy studies, from patients who had longstanding disease, 30 to 50 years," said Dr. Claudia Lucchinetti, a professor of neurology at the Mayo Clinic in Rochester, Minn. Lucchinetti and her colleagues analyzed brain tissue of early MS patients obtained through biopsies. The tissue was primarily white matter, but about one-fourth of the biopsies (138 of 563 patient screenings) also included tiny fragments of cortex. The scientists used that tissue as the focus of their study. The cortical tissues were viewed on a microscopic level. "The early lesions were highly inflammatory," said Lucchinetti, whose research is published in the Dec. 8 issue of the New England Journal of Medicine. The authors also noted that inflammation was also present in the meninges, the protective membranes that cover the surface of the brain and spinal cord, and was strongly associated with inflammation in the cortex tissue. Though the researchers say the additional study will help to better understand and track MS, it will have no immediate implication for MS care.http://www.msfocus.org/news-details.aspx?newsID=1972011-12-08T00:00:00-08:00The U.S. Food and Drug Administration (FDA) has launched a new website at www.fda.gov/safesharpsdisposal to inform consumers about the safe disposal of needles and other so-called “sharps” that are used at home, at work and while traveling. The website will help people understand the public health risks created by improperly disposing of used sharps and how users should safely dispose of them. Sharps is a term for medical devices with sharp points or edges that can puncture or cut the skin. Such medical devices include hypodermic needles and syringes used to administer medication; lancets or fingerstick devices to collect blood for testing; needle and tubing systems for infusing intravenous and subcutaneous medicines; and connection needles used for home hemodialysis. After being used, many sharps end up in home and public trash cans or flushed down toilets. This kind of improper disposal puts people, such as sanitation workers, sewage treatment workers, janitors, housekeepers, family members and children at risk for needle stick injuries or infection with viruses such as Hepatitis B and C and Human Immunodeficiency Virus (HIV). There are several ways to safely dispose of the sharps containers. When the sharps disposal container is about three-quarters full, follow your community waste guidelines for disposing of the container. These guidelines vary depending on where you live. Local trash collection departments or health departments may have information about sharps disposal programs. In general they include: Drop boxes: Collection sites are located at doctors’ offices, hospitals, pharmacies and police or fire stations. Hazardous waste sites: Public collection sites for hazardous materials (e.g., paints, cleaners and motor oil) may also accept sharps containers. Residential pickup programs: Some communities have pickup services for waste that includes sharps containers. Mail-back programs: The label on the container should have information on how to mail certain FDA-cleared sharps disposal containers to a collection site for proper disposal. If you are accidentally stuck by another person’s used sharp, FDA advises that you wash the exposed area promptly with water and soap or a skin disinfectant, (e.g. rubbing alcohol) and seek immediate medical attention.http://www.msfocus.org/news-details.aspx?newsID=1962011-11-09T00:00:00-08:00Researchers in Germany say they have found evidence that MS is triggered by natural intestinal flora, the so-called friendly bacteria that reside in the gut. Their study involved genetically engineered mice with normal gut bacteria that developed brain inflammation similar to MS in humans. Researchers at the Max Planck Institute of Neurobiology in Martinsried in Munich, Germanypublished the results of their study in the journal Nature.The human gut is home to some 100 billion bacteria from 2,000 different species, comprising 10 to 100 times more genes than in our entire genome. These microorganisms not only help us digest food, they are also essential for gut development. And they also play a role in promoting autoimmune disease, say the Max Planck researchers. In the study, the genetically modified mice were allowed to continue with their normal gut bacteria intact. The intestinal flora were removed in the other mice and they were kept under sterile conditions. The mice that kept their gut bacteria developed MS-like symptoms. According to the researchers, the bacteria first activated the immune T-cells, then the B-cells, which resulted in an attack on the myelin layer in the brain. The same could happen in humans with a corresponding genetic predisposition, they say. In their background information, the Max Planck researchers refer to previous research that shows active MS lesions have "inflammatory changes suggestive of a combined attack by autoreactive T and B lymphocytes against brain white matter." (Lymphocytes are the white blood cells of the immune system).They explain that T and B cells are normally innocuous members of a healthy immune system, but it appears something triggers them to become "autoaggressive", and the cause is commonly assumed to be environmental, with infection being the most common reason given.One implication of this study is that nutrition may play a key role in the development of MS, since diet largely determines the types of bacteria that colonize the gut. The team now wants to investigate the complete microbial genomes of people with MS and compare them to people without MS.http://www.msfocus.org/news-details.aspx?newsID=1952011-10-31T00:00:00-07:00Scientists are reporting the development and successful tests in humans of a sensor array that can diagnose MS from exhaled breath, an advance that they describe as a landmark in the long search for a fast, inexpensive and non-invasive test for MS. Their report appears in the journal ACS Chemical Neuroscience. Hossam Haick and colleagues report have identified volatile organic compounds that can be associated with MS from exhaled breath. Based on these findings, the researchers developed a new sensor array that can diagnose MS by analyzing the determined chemical compounds that appear in the breath of people with MS. Using the developed sensors, the researchers carried out a proof-of-concept clinical study on 34 people with MS and 17 healthy volunteers and found that the developed sensors are just as accurate as a spinal tap but without the pain or the risk of side effects. "The results presented here open new frontiers in the development of fast, noninvasive and inexpensive medical diagnosis tools for detection of chronic neurological diseases," the scientists stated. "The results could serve as a launching pad for the discrimination between different subphases of stages of multiple sclerosis as well as for the identification of multiple sclerosis patients who would respond well to immunotherapy." A large clinical study with the reported sensors is underway and will be reported in the future. Haick is a professor in the Department of Chemical Engineering and the Russell Berrie Nanotechnology Institute at the Technion – Israel Institute of Technology. http://www.msfocus.org/news-details.aspx?newsID=1942011-10-27T00:00:00-07:00Positive top-line results have been reported from CONFIRM, the second of two pivotal phase III clinical trials designed to evaluate the investigational oral compound BG-12 (dimethyl fumarate) in people with relapsing-remitting multiple sclerosis (RRMS). Results showed that 240 mg of BG-12, administered twice a day (BID) or three times a day (TID), demonstrated significant efficacy and favorable safety and tolerability profiles. Further analyses of the CONFIRM study are ongoing, and Biogen Idec, the company developing BG-12, anticipates presenting detailed data at a future medical meeting. BG-12 met the CONFIRM study's primary endpoint by significantly reducing annualized relapse rate (ARR) by 44 percent for BID and by 51 percent for TID versus placebo at two years. The CONFIRM study's reference comparator, glatiramer acetate (GA; 20 mg subcutaneous daily injection), reduced the ARR by 29 percent compared with placebo at two years. Initial results showed that BG-12 reduced 12-week confirmed disability progression as measured by the Expanded Disability Status Scale (EDSS) by 21 percent for BID and 24 percent for TID at two years compared to placebo, and GA reduced confirmed disability progression by 7 percent. "We now have strong positive results for BG-12 in two robust pivotal clinical trials with more than 2,600 patients," said Doug Williams, Ph.D., Biogen Idec's Executive Vice President of Research and Development. "We are gratified by these strong efficacy and safety results, which, when combined with BG-12's oral route of administration, position it as a potentially important MS therapy. We are working aggressively to prepare our regulatory submissions with the goal of making BG-12 available to MS patients as quickly as possible." In CONFIRM, both dose regimens of BG-12 showed favorable safety and tolerability profiles, which were similar to those seen in the previous late-stage study known as DEFINE. Overall, the incidence of adverse events (AEs), serious adverse events (SAEs) including serious infections, and discontinuations due to AEs were similar across all study groups, including placebo. The incidence of hepatic and renal events was also comparable among all study groups. The most common AEs in the BG-12 groups were flushing and GI events. There were no malignancies in the BG-12 groups. Biogen Idec presented data from DEFINE, at the 5th Joint Triennial Congress of the European and Americas Committees on Treatment and Research in Multiple Sclerosis (ECTRIMS and ACTRIMS) in October 2011.http://www.msfocus.org/news-details.aspx?newsID=1932011-10-26T00:00:00-07:00Youth who engage in off-hour employment before the age of 20 may be at risk for MS due to a disruption in their circadian rhythm and sleep pattern, according to researchers from Sweden. Findings of this novel study appear in Annals of Neurology, a journal published on behalf of the American Neurological Association and Child Neurology Society. Dr. Anna Karin Hedström and colleagues from the Karolinska Institutet in Stockholm analyzed data from two population-based studies—one with 1343 incident cases of MS and 2900 controls and another with 5129 prevalent MS cases and 4509 controls. The team compared the occurrence of MS among study subjects exposed to shift work at various ages against those who had never been exposed. All study subjects resided in Sweden and were between the ages of 16 and 70. Shift work was defined as permanent or alternating working hours between 9 p.m. and 7 a.m. Results showed that those in the incident MS cohort who had worked off-hour shifts for three years or longer before age 20 had a 2 fold-risk of developing MS compared with those who never worked shifts. Similarly, subjects in the prevalent cohort who engaged in shift work as teens had slightly more than a 2-fold risk of MS than subjects who never worked shifts. "Our analysis revealed a significant association between working shift at a young age and occurrence of MS," explains Dr. Hedström. "Given the association was observed in two independent studies strongly supports a true relationship between shift work and disease risk." The authors suggest that while disruption of circadian rhythm and sleep loss may play a role in the development of MS, the exact mechanisms behind this increased risk remain unclear and further study is needed. Previous research has determined that shift work—working during the night or rotating working hours—increases the risk of cardiovascular disease, thyroid disorders, and cancer. Circadian disruption and sleep restriction are associated with working night shifts; these factors are believed to disturb melatonin secretion and increase inflammatory responses, promoting disease states. MS is a central nervous system autoimmune inflammatory disorder that is thought to have an important environmental component, thus investigating lifestyle risk factors, such as sleep loss related to shift work, was an important objective and the focus of the current study. http://www.msfocus.org/news-details.aspx?newsID=1922011-10-18T00:00:00-07:00The U.S. Food and Drug Administration has approved Botox® (onabotulinumtoxinA) injection to treat urinary incontinence in people with neurologic conditions such as spinal cord injury and multiple sclerosis who have overactivity of the bladder. Uninhibited urinary bladder contractions in people with some neurological conditions can lead to an inability to store urine. Current management of this condition includes medications to relax the bladder and use of a catheter to regularly empty the bladder. The approved treatment consists of Botox being injected into the bladder resulting in relaxation of the bladder, an increase in its storage capacity, and a decrease in urinary incontinence. "Urinary incontinence associated with neurologic conditions can be difficult to manage,” said George Benson, deputy director, Division of Reproductive and Urologic Products. “Botox offers another treatment option for these patients." Injection of the bladder with Botox is performed using cystoscopy, a procedure that allows a doctor to visualize the interior of the bladder. Cystoscopy may require general anesthesia. The duration of the effect of Botox on urinary incontinence in people with bladder overactivity associated with a neurologic condition is up to 10 months. The effectiveness of Botox to treat this type of incontinence was demonstrated in two clinical studies involving 691 patients. The participants had urinary incontinence resulting from spinal cord injury or MS. Both studies showed statistically significant decreases in the weekly frequency of incontinence episodes in the Botox group compared with placebo. In addition to its use to improve the appearance of facial frown lines, Botox also is FDA-approved to treat chronic migraine headaches, certain kinds of muscle stiffness and contraction, severe underarm sweating, abnormal twitch of the eyelid, and a condition in which the eyes are not properly aligned. The most common adverse reactions observed following injection of Botox into the bladder were urinary tract infection and urinary retention. Those who develop urinary retention after Botox treatment may require self-catheterization to empty the bladder. Botox is marketed in the United States by Allergan Inc., of Irvine, Calif.http://www.msfocus.org/news-details.aspx?newsID=1912011-08-26T00:00:00-07:00New research has indicated that vitamin D directly terminates the production of a disease-causing protein, a discovery that may explain the association between levels of vitamin D in a person’s body and the person’s ability to resist or minimize the effects of MS. According to the investigators, a collaborative team of scientists from the University of Medicine and Dentistry of New Jersey and Stanford University, the mechanism they identify suggests what might be a new path toward pharmaceutical treatment of MS, as well as therapies for other autoimmune diseases. The mechanism identified by the research team works like this: During MS (“EAE” in mice), a damaging protein called interleukin-17 (IL-17) is produced by immune cells in the brain.After vitamin D binds to its receptor, the receptor parks itself on the gene that encodes IL-17. By doing so, the vitamin D receptor occupies a site normally reserved for a protein called NFAT, which is required to turn the IL-17 gene on.The gene stays off and IL-17 levels plummet.At the same time, the vitamin D receptor turns on another gene, whose product generates suppressive T cells that combat the destructive action of their IL-17-producing counterparts. The study is published in the September issue of the journal Molecular and Cellular Biology.http://www.msfocus.org/news-details.aspx?newsID=1902011-08-17T00:00:00-07:00A new way to fight inflammation uses molecules called polymers to mop up the debris of damaged cells before the immune system becomes abnormally active, researchers at Duke University Medical Center recently reported. The discovery, published Monday in the journal Proceedings of the National Academy of Sciences, may eventually offer a potential new approach to treat inflammatory auto-immune disorders such MS and lupus, which are marked by an overactive immune response. "Depending on the disease, cells that are damaged drive or perpetuate the immune response," said Bruce A. Sullenger, Ph.D., director of the Duke Translational Research Institute and senior author of the study. "We have shown that we can inhibit that process." Initial studies have been in mice, and researchers note that the long-term safety of the new anti-inflammatory approach in humans remains unknown. Sullenger said the idea for the new approach stems from earlier findings by Duke scientists and others that dying and diseased cells spill nucleic acids – the building blocks of life that include DNA and RNA – that then circulate at high levels in the bloodstream. While DNA and RNA inside the cell regulate important functions such as growth and division, outside of cells in the blood, these nucleic acids serve as powerful signals to the immune system that something is amiss. Once activated, the immune system launches an attack to fight whatever caused the cell damage, whether an infection or toxic substance. Under normal circumstances, this inflammatory response eventually restores order. In some cases, the inflammatory response becomes persistent and out of control, leading to tissue damage and causing symptoms such as fever and pain. The Duke scientists, working to interrupt this cycle, focused on a set of molecules called nucleic acid binding polymers that were designed to infiltrate the nucleic acid inside of cells and deactivate specific immune triggers. "Then we had a 'eureka moment,'" Sullenger said. "Because the inflammatory nucleic acids are outside of cells, whereas DNA and RNA normally function inside cells, we realized that the polymers could bind to the external nucleic acids without disrupting intracellular functions of DNA and RNA." It was a simple mop-up approach, and it worked as planned in experiments on mice: "We could use the polymers as molecular scavengers - sponges to go around and soak up and neutralize those inflammatory nucleic acids so the immune system doesn't recognize them and go into the overdrive of inflammation," Sullenger said. David S. Pisetsky, M.D., Ph.D., a rheumatologist at Duke and co-author of the study, said the anti-inflammatory approach has numerous potential applications, not only for auto-immune disorders, but also for the acute tissue damage of severe bacterial and viral infections, shock and injuries. http://www.msfocus.org/news-details.aspx?newsID=1892011-08-16T00:00:00-07:00The largest-ever gene study of MS has identified 29 new genetic variants associated with the disease, confirmed 23 previously known genetic links, and suggested five more genes that may contribute to the disease. Scientists regard the findings, recently published in the journal Nature, as significant for two reasons: Because many of the genes linked to MS are involved in regulating the immune system-- specifically, the development of T cells -- this boosts speculation that the disease is primarily an autoimmune disorder. It also gives researchers new targets for future treatment strategies. For the study, scientists compared DNA from nearly 10,000 people with MS with DNA from more than 17,000 unrelated, healthy individuals. The researchers were affiliated with the International Multiple Sclerosis Genetics Consortium and the Wellcome Trust Case Control Consortium. They said the newly-found links point to the idea that T-cells -- a type of white blood cell responsible for mounting an immune response -- and chemicals called interleukins play a key role in the development of the disease. Drugs that target the immune system include rituximab, sold under the brand name Rituxan® by Roche and Biogen to fight leukemia, Tysabri® from Biogen and Elan, Lemtrada, sold as Campath® by Sanofi's unit Genzyme for cancer, and Abbott and Biogen's Zenapax® or daclizumab. Mid-stage trial data for daclizumab recently showed the drug on a par with other new medicines for MS, but some of the side-effects were worrisome. In a second study reported in the Public Library of Science journal PLoS Genetics, researchers found that many of the genes linked to MS are also linked to other autoimmune diseases such as Crohn's disease and Type 1 diabetes. This also points to potential new uses for existing drugs in development, they said. "We have known for some time that many devastating diseases of the immune system must have common genetic causes," said Chris Cotsapas of Yale University in theUnited States, who led the PLoS study. "Now we have the outline of a map that tells us where we can look for common treatments." Experts think both genetic and environmental factors are equally important in determining who is likely to develop MS, and taken together, the known genetic variants probably explain about 20 percent of the genetic links, they said. Previous research has suggested a link between Vitamin D deficiency and an increased risk of MS. Compston's team said that along with the many genes which play a role in the immune system, they had also found two involved in the metabolism of Vitamin D -- which mostly comes from sunlight -- lending weight to a possible link between genes and the environment. In 2007 only three genes were linked to MS.http://www.msfocus.org/news-details.aspx?newsID=1882011-08-11T00:00:00-07:00In keeping with our mission to heighten public awareness of MS and promote understanding for those diagnosed with the disease, the MSF has joined the robust network of expert content partners at Sharecare, an online provider of health and wellness information. The partnership between MSF and Sharecare enables a greater number of people with MS, their families and caregivers, support group members, and the general public to have online access to credible, trusted information about the disease. Numerous experts from the MSF will share their knowledge related to the daily challenges people with MS face, including symptom management, employment issues, diet and exercise, and insurance and money matters. Launched in 2010 and based in Atlanta,Ga., Sharecare's mission is to greatly simplify the search for high-quality healthcare information and answer the world's questions of health. Created by Jeff Arnold and Dr. Mehmet Oz, in partnership with Harpo Studios, HSW International, Sony Pictures Television, and Discovery Communications, the Sharecare interactive social Q & A platform allows people to ask, learn and act upon questions of health and wellness. The company's innovative approach provides a wide array of expert answers to each question ranging from hospitals to MDs to non-profits to healthcare companies to active health consumers, ultimately creating a community where healthcare knowledge is built, shared and put into practice. "We are very pleased to be a part of this new strategic partnership with Sharecare. It will serve to broaden the scope of the MSF's distribution of vital information about multiple sclerosis to the benefit of the global MS community," said Jules Kuperberg, co-executive director of the Multiple Sclerosis Foundation. Though there are more than 400,000 people in the United States suffering from MS, it is often misdiagnosed due to similar symptoms with other diseases, as well as the infrequency of those symptoms and the unfamiliarity of MS in the healthcare professional community. "It is essential for people to have easy access to accurate health information so that they can better take care of themselves and their loved ones," said Donna Hill Howes, RN, MS, senior vice president, Sharecare. "That's why our partnership with the MSF marks another important milestone for Sharecare, as thousands of people will be able to find reliable answers and information regarding multiple sclerosis." Visit the MSF's page on Sharecare.com at http://www.sharecare.com/group/multiple-sclerosis-foundation. http://www.msfocus.org/news-details.aspx?newsID=1872011-07-12T00:00:00-07:00A shingles outbreak can nearly quadruple the risk of developing MS in the following year, but the overall risks remain small, according to research conducted inChina. Viruses are thought to play a role in triggering MS, and herpes zoster virus, which causes shingles, is one of the viruses previously implicated. But the new results reported in the Journal of Infectious Diseases are the first to quantify the risk. Shingles is an exceptionally painful, blistering skin rash caused by the herpes zoster virus, the same virus that causes chickenpox. In many patients who suffer chickenpox in childhood, the virus is not eradicated from the body, but lies dormant for years or decades, until it is prompted to start replicating by environmental conditions, stress or infectious diseases. Epidemiologist Herng-Ching Lin ofTaipeiMedicalUniversityinTaiwanand colleagues studied 315,550 adults with herpes zoster and a control group of 946,650 healthy controls, tracking them for a year to monitor for the development of MS. After adjusting for family income and geographic region -- both of which are known to play a role in MS -- the researchers found that the group with herpes zoster outbreaks was 3.96 times more likely to develop MS than the control group. On average, MS developed about 100 days after the shingles episode. The authors noted, however, that MS has a lower incidence in Asian populations than in Western ones, so it may be difficult to extrapolate their findings to the rest of the world. http://www.msfocus.org/news-details.aspx?newsID=1862011-06-10T00:00:00-07:00While it has often been suspected that MS is the result of inherent risk factors ignited by an environmental trigger, a group of researchers from the UC Irvine MS Research Center have recently published data that points to the possible combination of events that causes the disease, and includes a theory that defines the importance of Vitamin D. Using blood samples from about 13,000 people, study author Michael Demetriou, M.D., and colleagues identified the way environmental factors (including metabolism and vitamin D3 obtained through either sunlight exposure or diet) interact with four genes to affect how specific sugars are added to proteins regulating the disease. Those genes are interleukin-7 receptor-alpha, interleukin-2 receptor-alpha, MGAT1 and CTLA-4. Earlier work on mice by Demetriou revealed that changes in the addition of these specific sugars to proteins creates a spontaneous MS-like disease. They also found that N-acetylglucosamine (GlcNAc), a dietary supplement and simple sugar related to glucosamine, is able to suppress this process. The current research shows that both vitamin D3 and GlcNAc can reverse the effects of four human MS genetic factors and restore the normal addition of sugars to proteins. "This suggests that oral vitamin D3 and GlcNAc may serve as the first therapy for MS that directly targets an underlying defect promoting disease," Demetriou said. Virtually all proteins on the surface of cells, including immune and nervous system cells, are modified with complex sugars of variable lengths and composition. This adds information to proteins separate from that directly defined by the genome. The sugars interact with specific sugar-binding proteins on the cell, forming a molecular lattice that controls the clustering, signaling and surface expression of critical receptors and transporters, such as the T cell receptor and CTLA-4. Reducing sugar modification weakens the lattice and enhances growth and activity of immune system T cells in such a way that they increase neural degeneration -- a hallmark of MS. Production of the complex sugars is regulated by both metabolic and enzymatic functions, the latter altered by genetic MS risk factors and vitamin D3. Demetriou pointed out that the MGAT1 genetic variant linked to MS increases or decreases the sugars attached to proteins depending on metabolism -- one possible explanation for why people with the same genetic risk factor may or may not develop MS. http://www.msfocus.org/news-details.aspx?newsID=1852011-06-08T00:00:00-07:00Researchers have uncovered an unexpected role for estrogen receptors in the brain, and that role is to keep inflammation under control. The findings from a University of California (UC) study may have important implications for the treatment of multiple sclerosis and many other neurodegenerative diseases. They might also help to explain why women are three times more susceptible to developing MS than men are, researchers say. "We've really discovered an alternative pathway for estrogen receptors in the brain," said Christopher Glass of UC,San Diego. Estrogen receptors are primarily known to activate programs of gene expression, but in this case estrogen receptors are critical for turning off genes that would otherwise lead to chronic inflammation. Although MS is a very complicated disease, the findings suggest drugs targeted at certain ER receptors might effectively shut down the inflammation that goes along with the disease, the researchers suggest. The findings might also help to explain the strong sex bias in MS, which disproportionately affects relatively young women. "Although the estrogen receptors (ERs) have been implicated in the etiology of MS, no clear molecular mechanisms link them to relapsing-remitting MS," wrote David Gosselin and Serge Rivest in an accompanying commentary, noting that the recent research may fill that gap. In addition to explaining why females develop MS more often than males, Gosselin and Rivest continued, the findings also suggest that birth control medications and environmental factors such as estrogen analogs derived from plants might also promote development of the disease. These findings were reported in the May 13 issue of the Cell Press journal Cell. http://www.msfocus.org/news-details.aspx?newsID=1842011-05-19T00:00:00-07:00Children with multiple sclerosis and other pediatric demyelinating disorders are at increased risk of childhood obesity compared to children without these disorders, a new study conducted by pediatric MS specialists at the University at Buffalo (UB) has found. The findings build on a study done by other researchers showing an association between obesity in adolescence and MS in adulthood, but this appears to be the first study to evaluate obesity in relation to pediatric demyelinating disorders. "We found that rates of obesity were high in children with demyelinating disorders and were especially prevalent in boys," says E. Ann Yeh, MD, UB assistant professor of neurology and a pediatric MS specialist in the UB School of Medicine and Biomedical Sciences. She is the study’s first author. "Boys with demyelinating disorders were almost twice as likely to have a BMI greater than the 95th percentile than boys in the control group." The findings are based on the body mass index of 186 children: 41 with MS, 34 with acute disseminated encephalomyelitis (ADEM), a monophasic demyelinating disorder seen primarily in childhood; 15 with clinically isolated syndrome, an individual's first demyelinating episode (distinct from ADEM); eight with recurrent optic neuritis (RON), inflammation of the optic nerve, and 87 children with other neurological disorders who served as controls. Although obesity has been linked to heart disease and diabetes, among other illnesses, little is known about its relationship to inflammatory demyelinating disorders. "Increasing rates of childhood obesity have been reported widely in the media and in medical journals," says Yeh, "but no information is available on the relationship between obesity and childhood-onset demyelinating disorders." Subjects in the current study were patients of UB's Pediatric MS and Demyelinating Disorders Center of Excellence at Women and Children's Hospital of Buffalo. Data were collected prospectively between January 2003 and October 2010 in people under the age of 18. BMI scores, percentile of age scores, and a measure called BMI z-scores were calculated at disease presentation, using a standardized pediatric BMI calculator. (A Z-Score is a statistical measure that shows how a single data point compares to normal data.) Results showed that rates of overweight and obese children were greater in the demyelinating groups than in the control group, and that boys in the demyelinating groups were twice as likely as girls to have a BMI in the 95th percentile or greater. "These findings underscore the need for attention to the nutritional and physical needs of children with these disorders," states Yeh. "Comprehensive programs oriented toward the prevention of obesity in all children are needed, but we also need further studies to help define the relationship between obesity and risk for demyelinating disorders." Murali Ramanathan, PhD, UB professor of pharmaceutical sciences andneurology, and Bianca Weinstock-Guttman, PhD, UB associate professor of neurology,both associated with the Pediatric MS and Demyelinating Disorders Center of Excellence, also contributed to the research. Results of the current research were presented at a poster session at the 2011 American Academy of Neurology meeting held in April in Honolulu. http://www.msfocus.org/news-details.aspx?newsID=1832011-05-11T00:00:00-07:00Congratulations to Leah Olson from Aiken, S.C.! She is this year’s National MS Education and Awareness Month (NMSEAM) initiative grand prize winner of a cruise for two aboard the Foundation’s 2011 Cruise for a Cause™. In a creative, humorous, and candid video presentation, Olson conveyed what she had learned in her MS journey of self-discovery: "Many people try to tell us how to live our lives, what to eat, what “new” cures to use. The amount of information thrown at us can be overwhelming. The diagnosis of MS alone can be depressing. “One thing stands out above all the others: No one should define my life as person with MS but me. I can’t lose myself in my disease. I AM LEAH FIRST.” To view the winning video click here. The theme of the 2011 initiative was “My Search: Do it. Live it. Share it.” We wanted to know what you had learned along your MS journey of self-discovery that improved your life. And share you did! Thank you to everyone who took the time to contribute. Your words -- whether delivered in writing, a video, or a song -- were inspirational and heartwarming. Your discoveries about improving life with MS ranged from finding the right kind of shoes to wear to practicing yoga to supporting others with the disease; they were as unique as each of you. Other initiative entries that made it to the finals will be featured in the summer issue of the MSFocus, which is hot off the press! Look for it in your mailbox soon! You can also find our online edition just as soon as it is posted under the publications section of this website.http://www.msfocus.org/news-details.aspx?newsID=1822011-05-06T00:00:00-07:00This year marks the 25th anniversary of the Multiple Sclerosis Foundation. It represents both a monumental and satisfying juncture in our history. As we approach the next quarter century, it is only fitting that we present a new look. You may have noticed that our website and publications bear an updated logo. However, be assured while our look may be new, the high level of commitment and service to the MS community that has served as the cornerstone of this organization for the first 25 years will continue as before. http://www.msfocus.org/news-details.aspx?newsID=962011-05-02T00:00:00-07:00Neuroscientists have reported identifying a driving force behind autoimmune diseases such as MS, and suggest that blocking this cell-signaling molecule is the first step in developing new treatments to eradicate these diseases. Researchers led by Abdolmohamad Rostami, M.D., Ph.D., Professor and Chairman of the Department of Neurology at Jefferson Medical College of Thomas Jefferson University, found that GM-CSF, which stands for Granulocyte-macrophage colony-stimulating factor, appears to be the key culprit in the onset of MS. Without GM-CSF, T helper 17 cells (Th17) cells did not induce the MS-like disease in an experimental animal model. These findings were recently published in an advanced, online publication of Nature Immunology. Th17 cells have been shown to play an important pathogenic role in humans and experimental models of autoimmune diseases, but the mechanisms behind this have not been understood until now. "There was no connection between GM-CSF and Th17 cells before," said Dr. Rostami. "What we have shown in this paper is that GM-CSF derived from Th17 cells is important in the cell-signaling process that leads to inflammation in the central nervous system." "Now we know how the Th17 cells work and a better understanding of this mechanism and biology leads to new therapeutics," he adds. The results suggest that blocking GM-CSF activity may be a successful therapeutic strategy in MS, one of the most common neurological diseases affecting young adults, and other autoimmune diseases, said Dr. Rostami, who is also the Chair of Neurology at Thomas Jefferson University Hospital. These findings identify the interleukin-23 (IL-23)/ Th17/GM-CSF axis as the major pathway in pathogenesis of autoimmune central nervous system inflammation and likely other autoimmune diseases. IL-23, a known cytokine that causes autoimmune inflammation of the brain, induces production of more GM-CSF in Th17 cells, the researchers explain. Dr. Rostami, who is also director of the Neuroimmunology Laboratory in the Department of Neurology at JMC, and his colleagues used an animal model of MS called experimental autoimmune encephalomyelitis (EAE) for the investigation, a common model used to study the pathogenesis of the disease. Mice whose Th17 cells cannot produce GM-CSF did not develop neuroinflammation, thus GM-CSF is responsible for disease manifestation in this experimental model. This scenario suggests feed-forward loop of IL-23 and GM-CSF driving the pathogenic encephalitogenic immune response in the brain and spinal cord. Another recently published paper in Nature Immunology by Dr. Rostami and his team unraveled a mechanism that may help fight MS. The researchers found that a protein known as interkeukin-27 (IL-27) helped block, not induce, the onset of symptoms in animals with an MS-like disease. While increasing levels of GM-CSF may cause the disease, as shown in the current paper, increasing IL-27 concentrations may help quell an over-active immune system, the researchers reported. "That was the first time that we had direct evidence that by actively giving IL-27 like a drug, we can suppress EAE in mice," Dr. Rostami said. If similar findings from this current study of GM-CSF are found in human blood samples, this approach could eventually also be shown to be useful in the clinical setting, Dr. Rostami explains. Whether GM-CSF drives neuroinflammation in MS remains unknown, but the current findings highlight the potential that IL-23 and GM-CSF might serve a similar role in human disease. "This is the first step towards finding a new treatment," he said. "If we can try to neutralize GM-CSF by different means, for example, by trying to mimic it or trying to block the receptor for GM-CSF, we can hopefully ameliorate the disease." http://www.msfocus.org/news-details.aspx?newsID=942011-04-27T00:00:00-07:00New research suggests that people who are exposed to low levels of sunlight coupled with a history of having a common virus known as mononucleosis may be at greater odds of developing MS than those without the virus. "MS is more common at higher latitudes, farther away from the equator," said George C. Ebers, MD, with the University of Oxford in the United Kingdom and a member of the American Academy of Neurology. "Since the disease has been linked to environmental factors such as low levels of sun exposure and a history of infectious mononucleosis, we wanted to see whether the two together would help explain the variance in the disease across the United Kingdom." Infectious mononucleosis is a disease caused by the Epstein-Barr virus, which is a Herpes virus that is extremely common but causes no symptoms in most people. However, when a person contracts the virus as a teenager or adult, it often leads to infectious mononucleosis. The body makes vitamin D when exposed to ultraviolet B (UVB) light. For the study, researchers looked at all hospital admissions to National Health Service hospitals in England over seven years. Specifically, they identified 56,681 cases of MS and 14,621 cases of infectious mononucleosis. Scientists also looked at NASA data on ultraviolet intensity in England. The study found that adding the effects of sunlight exposure and mononucleosis together explained 72 percent of the variance in the occurrence of MS across the United Kingdom. Sunlight exposure alone accounted for 61 percent of the variance. "It's possible that vitamin D deficiency may lead to an abnormal response to the Epstein-Barr virus," Ebers said. He noted that low sunlight exposure in the spring was most strongly associated with MS risk. "Lower levels of UVB in the spring season correspond with peak risk of MS by birth month. More research should be done on whether increasing UVB exposure or using vitamin D supplements and possible treatments or vaccines for the Epstein-Barr virus could lead to fewer cases of MS." The research is published in the April 19, 2011, print issue of Neurology®, the medical journal of the American Academy of Neurology. The study was supported by the Multiple Sclerosis Society of Great Britain and Northern Ireland, the Medical Research Council and the Wellcome Trust.http://www.msfocus.org/news-details.aspx?newsID=952011-04-27T00:00:00-07:00A new analysis demonstrated that Gilenya (fingolimod) reduced the risk of disability progression in people with relapsing-remitting multiple sclerosis (RRMS), regardless of treatment history. This analysis of the phase three two-year FREEDOMS study was presented at the 63rd annual meeting of the American Academy of Neurology (AAN).In the two-year FREEDOMS study Gilenya reduced relapses by 54 percent compared to placebo. Also, Gilenya showed a 30 percent reduction in the risk of three-month confirmed disability progression as compared to placebo over two years.The FREEDOMS analysis presented this week at AAN showed that 0.5 mg Gilenya-treated participants who were new to therapy had a 37 percent reduction in the risk of three-month confirmed disability progression compared to placebo. For those previously treated with alternate therapies, Gilenya 0.5 mg led to a 30 percent reduction in risk. Consistent favorable effects on disability progression were observed for Gilenya-treated participants compared to placebo for subgroups defined by age, gender, and disease severity as defined by EDSS score, relapse activity prior to study, Magnetic Resonance Imaging (MRI) lesion burden, or lesion activity at the time of the start of the study.Gilenya is the first oral treatment in a new class of drugs called Sphingosine 1-Phosphate Receptor (S1PR) modulators. Approved in more than 35 countries including US, Canada and Germany, Gilenya has been studied in phase III clinical trials of over 2500 patients with relapsing-remitting MS.As shown in animal models, Gilenya stops many of the white blood cells (lymphocytes) from leaving the lymph nodes. Exactly how Gilenya works in MS is unknown, but it is thought that it results in fewer white blood cells entering the CNS to attack and damage the myelin sheath. If Gilenya treatment is stopped for any reason, the number of white blood cells circulating in the body increases over the first few days and gradually returns to normal within 1 to 2 months.The most common side effects are headache, liver enzyme elevations, influenza, diarrhoea, back pain, and cough. Other Gilenya-related side effects include transient, generally asymptomatic, heart rate reduction and atrio-ventricular block upon treatment initiation, mild blood pressure increase, macular edema, and mild bronchoconstriction.The rates of infections overall, including serious infections, were comparable among treatment groups, although a slight increase in lower respiratory tract infections (primarily bronchitis) was seen in patients treated with Gilenya. The number of malignancies reported across the clinical trial program was small, with comparable rates between the Gilenya and control groups.http://www.msfocus.org/news-details.aspx?newsID=922011-04-13T00:00:00-07:00A just-released study on the relationship between MS and chronic cerebral venous insufficiency (CCSVI) found that CCSVI may be a result of MS, not a cause, according to researchers. A narrowing of the extracranial veins that restricts the normal outflow of blood from the brain, CCSVI has been a much-discussed topic in the MS community and among healthcare providers since it was first publicly described as a possible cause of the disease in October 2009. The study, conducted by University at Buffalo (UB) researchers, appears in the current issue of Neurology, the journal of the American Academy of Neurology. Robert Zivadinov, M.D., PhD, associate professor of neurology in the UB School of Medicine and Biomedical Sciences and president of the International Society for Neurovascular Disease, is first author on the paper. "Our results indicate that only 56.1 percent of MS patients and 38.1 percent of patients with a condition known as clinically isolated syndrome (CIS), an individual's first neurological episode, had CCSVI. "While this may suggest an association between the MS and CCSVI, association does not imply causality. In fact, 42.3 percent of participants classified as having other neurological diseases (OND), as well as 22.7 percent of healthy controls involved in the study, also presented with CCSVI. "These findings indicate that CCSVI does not have a primary role in causing MS," says Zivadinov. "Our findings are consistent with increased prevalence of CCSVI in MS, but substantially lower than the sensitivity and specificity rates in MS reported originally by the Italian investigators." CCSVI is a complex vascular condition discovered and described by Paolo Zamboni, MD, from Italy's University of Ferrara. It is characterized by narrowing of vessels draining blood from the cranium. Zamboni hypothesized that this narrowing restricts the normal outflow of blood from the brain, resulting in alterations in the blood flow patterns within the brain that eventually cause injury to brain tissue and degeneration of neurons, leading to MS. Zamboni's original investigation in a group of 65 patients and 235 controls showed that CCSVI appeared to be strongly associated with MS, increasing the risk of having MS by 43 fold. The results of the UB study are based on 499 participants in the Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study, which began at the university in April 2009. The study group consisted of 289 persons with MS, 163 healthy controls, 26 with OND and 21 with CIS. MS participants also were defined by disease type: relapsing-remitting (RR), secondary progressive (SP), primary-progressive (PP), progressive-relapsing (PR) and MS with neuromyelitis optical (NMO) – a type of MS that affects the optic nerves and spinal cord exclusively. All participants underwent transcranial and extracranial echo-Doppler scans of the head and neck. Persons were considered "CCSVI-positive" if they met two or more of five venous hemodynamic (VH) criteria. Prevalence rates were calculated in three groupings: only subjects with positive and negative CCSVI diagnoses; only borderline cases included in the negative group; and subjects who fulfilled any of the five criteria. When only positive and negative CCSVI cases were considered, results showed a CCSVI prevalence of 62.5 percent in MS patients, 45.8 percent in those with OND, 42.1 percent in CIS, and 25.5 percent in healthy controls. When borderline cases were included as negative for CCSVI, prevalence figures were 56.1 percent in MS patients, 42.3 percent in those with OND, 38.1 percent with CIS and 22.7 percent in healthy controls. When all cases that met at least one of the five VH criteria were included in the analysis, CCSVI prevalence was 81.3 percent in MS cases, 76.2 percent in CIS patients, 65.4 percent in OND cases and 55.2 percent in healthy controls. The highest prevalence was seen in relapsing primary-progressive MS (89.4 percent), followed by non-relapsing secondary-progressive MS (67.2 percent), NMO (66.6 percent), primary-progressive MS (54.5 percent) and relapsing-remitting MS (49.2 percent). CCSVI prevalence was substantially higher in progressive MS than in non-progressive MS patients. In addition, patients with a progressive MS disease subtype had higher CCSVI prevalence than those with non-progressive MS. "The higher prevalence of CCSVI in progressive MS patients suggests that CCSVI may be a consequence, rather than a cause, of MS," says Bianca Weinstock-Guttman, M.D., co-principal investigator of the study and UB professor of neurology. Therefore, the possibility that CCSVI may be a consequence of MS progression cannot be excluded and should be further investigated. "Several studies have reported that patients with progressive MS show decreased blood flow through the brain's neuronal tissue, indicating that CCSVI may be secondary to reduced perfusion," says Weinstock-Guttman. "In addition, we recently showed an association between the severity of CCSVI and reduced cerebral blood flow in brain parenchyma of MS patients in an published pilot study." E. Ann Yeh, MD, UB assistant professor of neurology and a major collaborator on the study, noted that of the 10 pediatric MS patients who participated in the study, five presented with CCSVI (50 percent), yielding prevalence similar to that in adult MS patients. "Although the sample size was too small to draw any firm conclusions, these results suggest that CCSVI is also present in children and is not the result of aging," she says. Concludes Zivadinov: "The differences between our study, the original Italian CCSVI study and other recently published studies also emphasize the need for a multimodal approach for the assessment of CCSVI. In addition to Doppler sonography, use of selective venography, magnetic resonance venography and intraluminal Doppler methods can provide more evidence for the true prevalence of CCSVI in MS." The study was supported by the Buffalo Neuroimaging Analysis Center, Baird MS Center and the Jacobs Neurological Institute, all from UB, as well as the Direct MS Foundation, the Jacquemin Family Foundation and more than 500 individual donors. http://www.msfocus.org/news-details.aspx?newsID=932011-04-13T00:00:00-07:00Though detailed data has not yet been released, Biogen Idec has reported “top-line” results from the first phase three trial to evaluate the investigational oral compound BG-12 (dimethyl fumarate) as a monotherapy in people with relapsing-remitting multiple sclerosis (RRMS). Results of the DEFINE showed that 240 mg of BG-12, administered either twice or three times a day, met the primary study endpoint, demonstrating a “highly statistically significant reduction” in the proportion of people with RRMS who relapsed at two years compared with placebo, Biogen said. The company noted that both doses of BG-12 also provided a “statistically significant” reduction in annualized relapse rate, in the number of new or newly enlarging T2 hyperintense lesions, in new gadolinium-enhancing lesions, and in the rate of disability progression as measured by the Expanded Disability Severity Scale (EDSS) at two years. Initial data from the trial showed that BG-12 demonstrated a favorable safety and tolerability profile, according to Biogen. The overall incidence of adverse events and serious adverse events was similar among the placebo group and both BG-12 treatment groups. The safety profile was consistent with what was seen in the published phase two study of BG-12. Further analyses of the DEFINE study are ongoing, and the company anticipates presenting detailed data at a future medical meeting. Data from scientific studies suggest that BG-12 has the potential to be distinctive by reducing the entry into and the action of inflammatory cells on the central nervous system (CNS), as well as potentially protecting CNS cells from oxidative stress and death by activation of the Nrf-2 pathway. BG-12 received Fast Track designation from the U.S. Food and Drug Administration (FDA) in 2008. In addition to DEFINE, another phase three RRMS clinical trial, CONFIRM, is currently underway. This study is evaluating BG-12 and an active reference comparator, glatiramer acetate, against placebo on clinical relapse, magnetic resonance imaging (MRI) measures of MS, progression of disability, and safety. Results from CONFIRM are expected in the second half of 2011.http://www.msfocus.org/news-details.aspx?newsID=902011-04-12T00:00:00-07:00Though detailed data has not yet been released, Biogen Idec has reported “top-line” results from the first phase three trial to evaluate the investigational oral compound BG-12 (dimethyl fumarate) as a monotherapy in people with relapsing-remitting multiple sclerosis (RRMS). Results of the DEFINE showed that 240 mg of BG-12, administered either twice or three times a day, met the primary study endpoint, demonstrating a “highly statistically significant reduction” in the proportion of people with RRMS who relapsed at two years compared with placebo, Biogen said. The company noted that both doses of BG-12 also provided a “statistically significant” reduction in annualized relapse rate, in the number of new or newly enlarging T2 hyperintense lesions, in new gadolinium-enhancing lesions, and in the rate of disability progression as measured by the Expanded Disability Severity Scale (EDSS) at two years. Initial data from the trial showed that BG-12 demonstrated a favorable safety and tolerability profile, according to Biogen. The overall incidence of adverse events and serious adverse events was similar among the placebo group and both BG-12 treatment groups. The safety profile was consistent with what was seen in the published phase two study of BG-12. Further analyses of the DEFINE study are ongoing, and the company anticipates presenting detailed data at a future medical meeting. Data from scientific studies suggest that BG-12 has the potential to be distinctive by reducing the entry into and the action of inflammatory cells on the central nervous system (CNS), as well as potentially protecting CNS cells from oxidative stress and death by activation of the Nrf-2 pathway. BG-12 received Fast Track designation from the U.S. Food and Drug Administration (FDA) in 2008. In addition to DEFINE, another phase three RRMS clinical trial, CONFIRM, is currently underway. This study is evaluating BG-12 and an active reference comparator, glatiramer acetate, against placebo on clinical relapse, magnetic resonance imaging (MRI) measures of MS, progression of disability, and safety. Results from CONFIRM are expected in the second half of 2011.http://www.msfocus.org/news-details.aspx?newsID=912011-04-12T00:00:00-07:00The drug laquinimod reduced the number of relapses for people with MS in a large, long-term Phase III clinical study that will be presented as late-breaking research at the 63rd Annual Meeting of the American Academy of Neurology, April 9–16, 2011, in Honolulu. The study involved 1,106 people with relapsing-remitting MS in 24 countries. The participants received either a once-daily oral dose of 0.6 milligrams of laquinimod or a matching placebo for two years. Eighty percent of those taking laquinimod and 77 percent of those taking the placebo finished the two-year study. Participants treated with laquinimod experienced a statistically significant reduction of 23 percent in annual relapse rate, compared to participants treated with a placebo. Additionally, there was a reduction of 36 percent in disability progression, as well as a 33 percent reduction in brain atrophy for those treated with laquinimod. “These exciting results confirm that laquinimod has a significant impact on progression of disability and disease activity, while maintaining a high safety profile,” said lead author Giancarlo Comi, M.D., director of the Department of Neurology and Institute of Experimental Neurology at the Scientific Institute and University Vita-Salute San Raffaele in Milan, Italy. “This may be attributed to the novel mechanism of action of laquinimod, which effectively and safely addressed both the acute inflammatory activity and the accumulation of irreversible tissue damage. This suggests a substantial future role for laquinimod in the treatment of MS.” Laquinimod was safe and well tolerated, according to the study authors. Overall frequencies of adverse events were low and comparable to those observed in the placebo group. “The incidence of liver enzyme elevation was higher in laquinimod treated patients,” said Comi. “However, these elevations were temporary, reversible and did not lead to any signs of liver problems.” The study was supported by Teva Pharmaceuticals. http://www.msfocus.org/news-details.aspx?newsID=892011-04-11T00:00:00-07:00While some people with MS have reported pain relief from using marijuana, the drug apparently has a negative effect on thinking skills, according to research recently published in print issue of Neurology®, the medical journal of the American Academy of Neurology. Some clinical trials have reported a mild benefit of marijuana on pain, bladder dysfunction and spasticity in MS, an auto-immune disease that affects the brain and spinal cord. The researchers studied two groups of 25 people each between the ages of 18 and 65 with MS. One group used marijuana and the other reported no marijuana use for many years. Urine tests were used to confirm use or non-use of the drug. The groups were matched so there would not be significant differences due to age, gender, level of education, IQ before diagnosis, level of disability and duration of time with MS. On average, the duration of marijuana use was 26 years. A total of 72 percent of users reported smoking marijuana on a daily basis while 24 percent reported weekly use and one person reported bi-weekly use. Participants’ cognitive skills were tested. The research found that people who used marijuana performed significantly worse with respect to attention, speed of thinking, executive function and visual perception of spatial relationships between objects. For example, on a sensitive test of information processing speed, those using marijuana scored approximately one third lower than non-users. Those who used marijuana were also twice as likely as non-users to be classified as globally cognitively impaired, defined as impairment on two or more aspects of intellectual functioning. “Given that about 40 to 60 percent of MS patients have problems with cognitive function to begin with, any drug that may add to this burden is cause for concern,” said study author Anthony Feinstein, MPhil, MD, PhD, with Sunnybrook Health Services Center and the University of Toronto in Ontario, Canada. “This study provides empirical evidence that prolonged use of inhaled or ingested marijuana in MS patients is associated with poorer cognitive performance, and these effects have to be weighed against any possible benefit of using marijuana for medicinal purposes.” http://www.msfocus.org/news-details.aspx?newsID=882011-04-06T00:00:00-07:00A long term study reports about the effectiveness of replacing bone marrow, purposely destroyed by chemotherapy, with autologous (self) stem cell rescue for people with aggressive forms of multiple sclerosis (MS). The study is published in the March 22, 2011, print issue of Neurology the medical journal of the American Academy of Neurology. For the treatment, chemotherapy drugs are used to kill all of the patient’s blood cells, including the immune cells that are believed to be attacking the body’s own central nervous system. Bone marrow stem cells removed from the patient are purified and transplanted back into the body, which saves life by replacing the blood cells and also is proposed to ‘reboot’ the immune system. The study followed 35 people for an average of 11 years after transplant. The study involved people with rapidly progressive MS who had tried a number of other treatments for MS with little or no effect. All were severely disabled by the disease, with an average score of six on a scale of disease activity that ranges from zero being a normal neurological examination to 10 meaning death due to MS. A score of six means able to walk with a cane or crutch; a seven is mainly in a wheelchair. All had worsened by at least one point on the scale in the year prior to the transplant. After the transplants, the probability of participants having no worsening of their disease for 15 years was 25 percent. The probability was higher–44 percent–for those who had active brain lesions, which are a sign of disease activity, at the time of the transplant. For 16 people, symptoms improved by an average of one point on the scale after the transplant, and the improvements lasted for an average of two years. The participants also had a reduction in the number and size of lesions in their brains. Two people (six percent) died from complications related to the transplant at two months and 2-1/2 years post-transplant. Study author Vasilios Kimiskidis, MD, of Aristotle University of Thessaloniki Medical School in Thessaloniki, Greece noted that more research is needed on this treatment, including studies that compare people receiving the treatment to a control group that does not receive the treatment. “Keeping that in mind, our feeling is that stem cell transplants may benefit people with rapidly progressive MS,” he said. “This is not a therapy for the general population of people with MS but should be reserved for aggressive cases that are still in the inflammatory phase of the disease.” http://www.msfocus.org/news-details.aspx?newsID=862011-03-24T00:00:00-07:00We are proud to announce the launch of the Multiple Sclerosis Emerging Therapies Collaborative. The Collaborative – which includes the members of the MS Coalition, the American Academy of Neurology, and the VA Multiple Sclerosis Centers of Excellence East and West – has as its mission: To develop and disseminate timely, evidence-based resources to persons affected by multiple sclerosis and health care professionals, in order to promote optimal, individualized treatment of the disease by facilitating effective communication and medical decision-making. The emergence of new MS therapies is both exciting and challenging for people living with MS, the clinicians who treat them, and the organizations that serve them. The groups that form this Collaborative are looking to speak with a single voice in an effort to promote understanding and reduce confusion within the MS community concerning newly emerging MS therapies. The Collaborative has established a dedicated, rapid-response website (www.ms-coalition.org/EmergingTherapies) that will present downloadable information sheets for professional and lay readers about each newly-approved treatment. The information sheets, which include the known benefits and risks of each treatment as well as answers to commonly-asked questions, are written to complement one another in order to promote clinician-patient communication. Users can direct questions to emergingtherapies@ms-coalition.org. The fingolimod (Gilenya) information is now available on the site, and the Collaborative looks forward to adding additional resources in the near future. Each of the participating organizations will be promoting this unique resource to its constituents and providing a link to the Collaborative website. Here is an introduction to the groups participating in this exciting new venture: MS Coalition: Founded in 2005, the MSC is a collaborative network of independent MS organizations whose vision is to improve the quality of life for those affected by MS. Coalition members include: Accelerated Cure Project for Multiple Sclerosis: a national nonprofit dedicated to curing MS by determining its causes. Our repository contains samples and data from people with MS and other demyelinating diseases. Samples are available to researchers who submit all data they generate back to the repository to be shared with others. Can Do Multiple Sclerosis): a national nonprofit organization and innovative provider of lifestyle empowerment programs for people with MS and their support partners. We empower people to see beyond their MS, giving them knowledge and confidence to adopt healthy lifestyle behaviors, actively co-manage their MS, and transform challenges into possibilities. Consortium of Multiple Sclerosis Centers (CMSC): provides leadership in clinical research and education; develops vehicles to share information and knowledge among members; disseminates information to the healthcare community and to persons affected by multiple sclerosis; and develops and implements mechanisms to influence health care delivery. International Organization of MS Nurses (IOMSN): the first and only international organization focused solely on the needs and goals of professional nurses, anywhere in the world, who care for people with multiple sclerosis. Mentoring, educating, networking, sharing – the IOMSN supports nurses in their continuing effort to offer hope. Multiple Sclerosis Association of America (MSAA): a national nonprofit organization dedicated to enriching the quality of life for everyone affected by MS. We provide support and direct services such as a bilingual Helpline, equipment, MRI assistance, and education through events, publications, and website. Our organization strives to help each individual on a personal level. Multiple Sclerosis Foundation (MSF): has as its mission to provide nationally-accessible programs and services to those affected by MS, which in turn, helps them maintain their health, safety, self-sufficiency, and personal well-being. We strive to heighten public awareness of MS in order to elicit financial support while promoting understanding for those diagnosed. National Multiple Sclerosis Society: is a collective of passionate individuals who want to do something about MS NOW – to move together toward a world free of multiple sclerosis. The Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS. United Spinal Association: a national organization advocating for people with spinal cord injuries and disorders, including 5000 members with MS. Issues include health care, home and community services, and medical equipment access. We sponsor an MS Fellowship at the University of Washington. American Academy of Neurology (AAN): an international professional organization, established in 1948, with more than 22,000 neurologists and neuroscience professionals dedicated to promoting the highest-quality patient-centered neurologic care. Veterans Administration MS Centers of Excellence (MSCoE): committed to serving the health care needs of approximately 40,000 Veterans with MS. The Centers of Excellence, which are located in Seattle and Portland (MSCoE, West) and Baltimore (MSCoE, East), are organized around Clinical Care: Education and Training; Research and Development; Informatics and Telemedicine. We welcome your feedback and suggestions. If you have any questions or comments, please contact: editor@msfocus.org. http://www.msfocus.org/news-details.aspx?newsID=872011-03-24T00:00:00-07:00National Multiple Sclerosis Education and Awareness Month (NMSEAM) kicks off today! Participating groups and individuals throughout the country will recognize Awareness Month with a variety of activities all reaching towards a common goal: to promote an understanding of the scope of the disease and to assist those with MS in making educated decisions about their healthcare. In New Mexico, Wisconsin, Illinois, Vermont, Louisiana, Arizona, New Hampshire and Oklahoma, the governors have all officially recognized NMSEAM with proclamations! “My Search: The MS Journey of Self-Discovery” is the MSF’s theme for 2011 NMSEAM. We know that many of you are actively seeking ways to improve your quality of life with MS. You call us in search of ideas and answers, and we hear your eagerness to learn as much as you can about managing your MS. Along your journey, you must make many choices: What kind of treatment is best for me? How can I make adaptations so I can continue to work? Will I ever be able to accept this disease? Who can I turn to for support? Our national education programs will be providing MS experts to talk about these very important topics. In addition, teleconferences (details below) will be offered at times convenient to those of you on the East Coast and the West Coast. Thousands of awareness kits have been distributed, which contain information to assist you in your search for better living with MS as well as information to help others better understand MS and how it affects your life. This year’s initiative for NMSEAM is “My Search: Do it. Live it. Share it.” We invite you to share your discoveries about what has worked best for you as you journey through life with MS. You might even win a cruise for two on the MSF’s 2011 Cruise for a Cause ®! Five runners-up chosen in a random drawing will each receive a Visa gift card worth $50. Deadline for entries is midnight April 15th. The winners will be notified by May 15th. For more information on how to enter go to http://www.msfocus.org/get-involved.aspx. And speaking of sharing, don’t forget to join the Facebook chatter on the MSF’s NMSEAM page. Back by popular demand will be the “MS Fact” daily posting, but with an all-new feature: Video posts of the facts being read by your favorite MS healthcare experts and MSF ambassadors. Or get the daily MS fact on Twitter. To find the MSF on your preferred social network, go to http://www.msfocus.org/get-involved.aspx. AWARENESS MONTH TELECONFERENCES Emerging Therapies with Dr. Aaron Boster, Assistant Clinical Professor of Neurology, Ohio State University Wednesday, March 2nd from 7:00 p.m. – 8:00 p.m. EST Thursday, March 3rd from 7:00 p.m. – 8:00 p.m. PST Sponsored by an educational grant from TEVA Neuroscience Strategies to Improve Walking, Balance, Strength, and Flexibility with Herbert Karpatkin, PT, DSc, NCS, MSCS Monday, March 21st from 8:00 p.m. – 9:00 p.m. EST Tuesday, March 22nd from 7:00 p.m. – 8:00 p.m. PST Sponsored by an educational grant from Acorda Therapeutics To attend these teleconferences, please call up to 10 minutes before the starting time: 888-550-5602, enter 2344 1168http://www.msfocus.org/news-details.aspx?newsID=852011-03-01T00:00:00-08:00People with multiple sclerosis may find it harder to learn, remember or process information on warmer days of the year, according to new information from a small study from the Kessler Foundation in West Orange, New Jersey. "Studies have linked warmer weather to increased disease activity and lesions in people with MS, but this is the first research to show a possible link between warm weather and cognition, or thinking skills, in people with the disease," said study author Victoria Leavitt, PhD, with the Kessler Foundation.For the study, 40 people with MS and 40 people without MS were given tests that measured learning, memory, and the speed at which they processed information. Those people with MS also underwent brain scans. The daily temperature on the days the tests were taken was also recorded.The study found that people with MS scored 70 percent better on thinking tests during cooler days compared to warmer days of the year. There was no link between thinking test scores and temperature for those without MS."With more research, this information might help guide people with MS in life decisions and their doctors with clinical treatment. Scientists may also consider the effect of warmer weather on cognition when conducting clinical trials," says Leavitt.These findings will be presented at the American Academy of Neurology's 63rd Annual Meeting in Honolulu April 9 to April 16, 2011. http://www.msfocus.org/news-details.aspx?newsID=842011-02-24T00:00:00-08:00Researchers at the University of Illinois at Chicago (UIC) have shown for the first time that damage to a particular area of the brain and a consequent reduction in a key neurotransmitter involved as an immunosuppressant in the brain are associated with multiple sclerosis. The pathological processes in MS are not well understood, but an important contributor to its progression is the infiltration of white blood cells involved in immune defense through the blood-brain barrier. Douglas Feinstein, research professor in anesthesiology at the UIC College of Medicine, and his colleagues previously showed that the neurotransmitter noradrenaline plays an important role as an immunosuppressant in the brain, preventing inflammation and stress to neurons. Noradrenaline is also known to help to preserve the integrity of the blood-brain barrier. Because the major source of noradrenaline is neurons in an area of the brain called the locus coeruleus (LC), the UIC researchers hypothesized that damage to the LC was responsible for lowered levels of noradrenaline in the brains of people with MS. "There's a lot of evidence of damage to the LC in Alzheimer's and Parkinson's disease, but this is the first time that it has been demonstrated that there is stress involved to the neurons in the LC of MS patients, and that there is a reduction in brain noradrenaline levels," said Paul Polak, research specialist in the health sciences in anesthesiology and first author on the paper. For the last 15 years, Feinstein and his colleagues have been studying the importance of noradrenaline to inflammatory processes in the brain. "We have all the models for studying this problem, so in some ways it was a small step to look at this question in MS," said Polak. The researchers found that LC damage and reduced levels of noradrenaline occur in a mouse model of MS and that similar changes could be found in the brains of MS patients. The findings suggest that LC damage, accompanied by reduction in noradrenaline levels in the brain, may be a common feature of neurologic diseases, Polak said. "There are a number of FDA-approved drugs that have been shown to raise levels of noradrenaline in the brain, and we believe that this type of therapeutic intervention could benefit patients with MS and other neurodegenerative diseases, and should be investigated," he said. The study is available online in the journal Brain. http://www.msfocus.org/news-details.aspx?newsID=832011-02-17T00:00:00-08:00People who spend more time in the sun and those with higher vitamin D levels may be less likely to develop MS, according to a new study out of Australia. "Previous studies have found similar results, but this is the first study to look at people who have just had the first symptoms of MS and haven't even been diagnosed with the disease yet," said study author Robyn Lucas, PhD, of Australian National University in Canberra. "Other studies have looked at people who already have MS-then it's hard to know whether having the disease led them to change their habits in the sun or in their diet." The multi-site study involved 216 people age 18 to 59 who had a first event with symptoms of the type seen in MS. Those people were matched with 395 people with no symptoms of possible MS who were of similar ages, of the same sex and from the same regions of Australia. The participants reported how much sun they were exposed to during different periods of their lives, and researchers also measured the amount of skin damage participants had from sun exposure and the amount of melanin in their skin. Vitamin D levels (from sun exposure, diet, and supplement use) were measured by blood tests. The risk of having a first event, diagnosed by a doctor, ranged from approximately 2 to 9 new cases for every 100,000 people per year in this study. The reported UV light exposure of participants ranged from about 500 to over 6,000 kilojoules per meter squared. The researchers found that the risk of having a diagnosed first event decreased by 30 percent for each UV increase of 1,000 kilojoules. They also found that people with most evidence of skin damage from sun exposure were 60 percent less likely to develop a first event than the people with the least damage. People with the highest levels of vitamin D also were less likely to have a diagnosed first event than people with the lowest levels. Studies have shown that MS is more common in latitudes further away from the equator, and this has been confirmed in Australia. "Added together, the differences in sun exposure, vitamin D levels and skin type accounted for a 32-percent increase in a diagnosed first event from the low to the high latitude regions of Australia," Lucas said. Lucas noted that the effects of sun exposure and vitamin D acted independently of each other on the risk of first event. "Further research should evaluate both sun exposure and vitamin D for the prevention of MS," Lucas said. Lucas also stated that people should continue to limit their sun exposure due to skin cancer risks. She also noted that the risks of tanning beds far outweigh any possible protective effect against MS. Exposure to the sun has not been shown to benefit people who already have MS. The study was supported by the U.S. National Multiple Sclerosis Society, the National Health and Medical Research Council of Australia, the ANZ William Buckland Foundation and Multiple Sclerosis Research Australia. Results from the study appeared in the February 8, 2011, print issue of Neurology®, the medical journal of the American Academy of Neurology. http://www.msfocus.org/news-details.aspx?newsID=822011-02-11T00:00:00-08:00Please join the MSF for our Inaugural Spring Fling at Roger Dean Stadium in Jupiter, Fla. Help celebrate MS Awareness Month as the Florida Marlins host the New York Mets, Friday March 4, 2011. This special day will include silent auction items and a grand prize raffle you won’t want to miss.Enjoy spring training from the newly air-conditioned party deck. The all-inclusive package includes a game ticket, seat in the Cassidy Cool Zone, and two-hour buffet filled with all your ballpark favorites. Limited VIP batting practice tickets are also available, and one special guest will have the opportunity to throw out the first pitch. For more details and to purchase tickets click here.http://www.msfocus.org/news-details.aspx?newsID=812011-01-31T00:00:00-08:00A new guideline from the American Academy of Neurology recommends using plasma exchange to treat people with severe relapses in MS and related diseases, as well as those with certain kinds of nerve disorders known as neuropathies. The guideline is published in the January 18, 2011, print issue of Neurology®, the medical journal of the American Academy of Neurology.Plasma exchange, formally known as plasmapheresis, is the process of taking blood out of the body, removing constituents in the blood's plasma thought to be harmful, and then transfusing the rest of the blood (mainly red blood cells) mixed with replacement plasma back into the body.The guideline recommends doctors consider using plasma exchange as a secondary treatment for severe flares in relapsing forms of MS and related diseases. The treatment was not found to be effective for secondary progressive and chronic progressive forms of MS. According to the guideline, doctors should offer plasma exchange for treatment of severe forms of Guillain-Barré syndrome and for temporary treatment of chronic inflammatory demyelinating polyneuropathy. Plasma exchange may also be considered for treatment of some other kinds of inflammatory neuropathies."These types of neurologic disorders occur when the body's immune system mistakenly causes damage to the nervous system. Plasma exchange helps because it removes factors in the plasma thought to play a role in these disorders," said guideline lead author Irene Cortese, MD, a neurologist with the National Institutes of Health in Bethesda, Md., and a member of the American Academy of Neurology.Side effects of plasma exchange include infection and blood-clotting issues.http://www.msfocus.org/news-details.aspx?newsID=802011-01-20T00:00:00-08:00Bayer HealthCare Pharmaceuticals has announced that the Triad alcohol prep pads packaged for use in the U.S. with Betaseron should not be used, as there has been a recall of alcohol prep pads, swabs and swab sticks manufactured by the Triad Group and marketed under various brand names. The recall of the Triad Group alcohol prep products is due to potential contamination of these products with bacteria, Bacillus cereus, that could lead to life-threatening infections. Bayer also stated, “There is no involvement or potential contamination of the Betaseron vial or other components in the Betaseron U.S. packaging. This issue is confined to the actual Triad alcohol prep products. Triad alcohol prep products are not used in Betaseron packaging outside of the United States.” Bayer instructs people using Betaseron to immediately discontinue using the Triad alcohol prep pads included in the Betaseron packaging and dispose of those pads in the trash. When preparing to take their Betaseron injection, they should use an alternative sterile alcohol prep pad that is not subject to this Triad recall or use a sterile gauze pad in conjunction with isopropyl alcohol. Further information on this Triad recall can be found on the FDA website at http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm239319.htm. If you have additional questions, please consult with your pharmacist or healthcare provider or contact BETAPLUS at 1-800-788-1467 option 1 to speak to a BETA Nurse. Or call Bayer at 1-888-84-BAYER, where operators will be available 24 hours a day to respond to questions from consumers or medical professionals. http://www.msfocus.org/news-details.aspx?newsID=792011-01-10T00:00:00-08:00Many studies have confirmed that depression is experienced by the majority of people with MS, but a recent study from Mississippi State University suggests that minorities might especially be at risk for developing depressive symptoms associate with the disease. Of study participants with the neurological condition, 44.2 percent of Latinos and 45.8 percent of African-Americans reported at least mild depression, compared with 38.7 percent of Caucasians with MS. However, more Latinos never received mental health care, compared to whites or African-Americans with MS, according to lead study author Robert Buchanan, Ph.D. Buchan is a professor in the department of political science and public administration at Mississippi State University. For the study which appeared in the December 2010 issue of the journal Ethnicity & Disease, authors used data from a registry of 26,967 white, 715 Latino and 1,313 African- American people with MS. “Depression is even more common in people with MS,” said Staley Brod, M.D., director of the Multiple Sclerosis Research Group Clinic at the University of Texas-Houston. “In general it is a treatable problem and, in most cases, the neurologist that’s seeing the patient can deal with it effectively,” he said. However, compared to African-Americans and Caucasians, Latinos were significantly less likely to get mental health services, obtain medical care from a specialist or receive occupational therapy or home health care assistance. “A surprising finding to me is that despite these inequities in mental health, rehabilitation and other medical subspecialties, there’s no disparity in treatment,” Brod said. Similar percentages of whites, Latinos, and African-Americans received disease-modifying therapies. In terms of functioning and disability levels, Latinos with MS fared better than other ethnic groups, the study reported. More Latinos reported normal function for mobility, bladder and bowel function, and vision, compared to whites and African-Americans. Buchanan said that because the study results rely on the responses of voluntary participants, not a random data sample, the applicability of the findings to the larger MS population might be limited.http://www.msfocus.org/news-details.aspx?newsID=782011-01-04T00:00:00-08:00MS affects some cognitive functions more severely in black children than white children, according to newly published research from a team at the University of Alabama at Birmingham (UAB). The findings could help healthcare providers create individualized treatments for children suffering from the disease. "We don't yet understand the biological reasons, but the bottom line is treatment options must be re-evaluated and be aggressive enough, especially with black patients, to prolong quality of life for as long as possible," says Kelly Ross, M.A, a psychology doctoral degree candidate in the UAB College of Arts and Sciences and lead author of the study. Although MS in children is much less common than in adults, the disease may impact cognitive function more in younger people because their nervous systems still are developing. The UAB team reviewed university-collected data on the cognitive assessments of 42 children with MS, 20 black and 22 white, who were treated from April 2006 to September 2009 at the UAB Center for Pediatric Onset Demyelinating Disorders, which operates at the Children's Hospital of Alabama. "The UAB CPODD clinic is the only one of the six Pediatric MS Centers of Excellence in the country that, based on its location, serves a considerable black population; this gave us access to unique comparative data," Ross says. Controlling for variables like socioeconomic status and education level, the researchers found that black children with MS may be at higher risk than whites for adverse cognitive impacts in the areas of language and complex attention, such as the ability to juggle multiple tasks at once. "The differential effects of the disease in children based on their race is a trend very similar to research in adults in which MS more severely affects some functions in black patients," says Jayne Ness, M.D., Ph.D., CPODD director and associate professor of pediatrics in the UAB School of Medicine and a co-author of the study. "Whether it is treatment of MS itself, adjunctive therapies or working with school systems to see that a proper special-education curriculum is in place, the results of this research could reshape the way we help pediatric MS patients and their families manage the disease," says Joe Ackerson, Ph.D., a former UAB faculty member and co-author of the study. The UAB researchers say the study, published in the Dec. 7, 2010, issue of Neurology, is the first to reveal that the severity of cognitive difficulties in pediatric MS may vary between black and white children.http://www.msfocus.org/news-details.aspx?newsID=762010-12-07T00:00:00-08:00MS affects some cognitive functions more severely in black children than white children, according to newly published research from a team at the University of Alabama at Birmingham (UAB). The findings could help healthcare providers create individualized treatments for children suffering from the disease. "We don't yet understand the biological reasons, but the bottom line is treatment options must be re-evaluated and be aggressive enough, especially with black patients, to prolong quality of life for as long as possible," says Kelly Ross, M.A, a psychology doctoral degree candidate in the UAB College of Arts and Sciences and lead author of the study. Although MS in children is much less common than in adults, the disease may impact cognitive function more in younger people because their nervous systems still are developing. The UAB team reviewed university-collected data on the cognitive assessments of 42 children with MS, 20 black and 22 white, who were treated from April 2006 to September 2009 at the UAB Center for Pediatric Onset Demyelinating Disorders (CPODD), which operates at the Children's Hospital of Alabama. "The UAB CPODD clinic is the only one of the six Pediatric MS Centers of Excellence in the country that, based on its location, serves a considerable black population; this gave us access to unique comparative data," Ross says. Controlling for variables like socioeconomic status and education level, the researchers found that black children with MS may be at higher risk than whites for adverse cognitive impacts in the areas of language and complex attention, such as the ability to juggle multiple tasks at once. "The differential effects of the disease in children based on their race is a trend very similar to research in adults in which MS more severely affects some functions in black patients," says Jayne Ness, M.D., Ph.D., CPODD director and associate professor of pediatrics in the UAB School of Medicine and a co-author of the study. "Whether it is treatment of MS itself, adjunctive therapies or working with school systems to see that a proper special-education curriculum is in place, the results of this research could reshape the way we help pediatric MS patients and their families manage the disease," says Joe Ackerson, Ph.D., a former UAB faculty member and co-author of the study. The UAB researchers say the study, published in the Dec. 7, 2010, issue of Neurology, is the first to reveal that the severity of cognitive difficulties in pediatric MS may vary between black and white children. http://www.msfocus.org/news-details.aspx?newsID=772010-12-07T00:00:00-08:00Researchers from Purdue University in Indiana have found evidence that an environmental pollutant may play an important role in causing MS, and that a hypertension drug might be used to treat the disease. The toxin acrolein was elevated by about 60 percent in the spinal cord tissues of mice with a disease similar to MS, said Riyi Shi, a medical doctor and a professor of neuroscience and biomedical engineering in Purdue’s Department of Basic Medical Sciences, School of Veterinary Medicine, Center for Paralysis Research and Weldon School of Biomedical Engineering. The compound is an environmental toxin found in air pollutants including tobacco smoke and auto exhaust. Also, acrolein is produced within the body after nerve cells are damaged. Acrolein induces the production of free radicals, compounds that cause additional injury to tissues after disease or physical trauma. Previous studies by this research team found that neuronal death caused by acrolein can be prevented by administering the drug hydralazine, an FDA-approved medication used to treat hypertension. The elevated acrolein levels in the MS mice were cut in half when treated with hydralazine. "Only recently have researchers started to understand the details about what acrolein does to the human body," Shi said. "We are studying its effects on the central nervous system, both in trauma and degenerative diseases such as multiple sclerosis." The new findings show that hydralazine also delays onset of the MS-like disease in mice and reduces the severity of symptoms by neutralizing acrolein. "The treatment did not cause any serious side effects in the mice," Shi said. "The dosage we used for hydralazine in animals is several times lower than the standard dosing for oral hydralazine in human pediatric patients. Therefore, considering the effectiveness of hydralazine at binding acrolein at such low concentrations, we expect that our study will lead to the development of new neuroprotective therapies for MS that could be rapidly translated into the clinic." The researchers also learned the specific chemical signature of the drug that binds to acrolein and neutralizes it, potentially making it possible to create synthetic alternatives with reduced side effects. The studies are detailed in a paper appearing online this month in the journal Neuroscience. "We think that acrolein is what degrades myelin, so if we can block that effect then we can delay the onset of MS and lessen the symptoms," Shi said. Other researchers had previously shown that acrolein damages liver cells and that the damage can be alleviated by hydralazine, leading the Purdue researchers to study its possible effects on spinal cord tissues. Further research will be conducted, and Shi's group has identified other potential compounds for binding acrolein. http://www.msfocus.org/news-details.aspx?newsID=752010-11-24T00:00:00-08:00While testing a drug originally developed to treat chronic pain, researchers in Colorado discovered that the drug may have potential to slow MS progression and perhaps even reverse damage caused by the disease. Professor Linda Watkins of the University of Colorado at Boulder and her colleagues in the department of psychology and neuroscience discovered that a single injection of a compound called ATL313 -- an anti-inflammatory drug being developed to treat chronic pain -- stopped the progression of paralysis in rats for weeks at a time. The paralysis was caused by the MS model of the disease in rats. Lisa Loram, a senior research associate who spearheaded the project in Watkins' laboratory, presented the findings at the Society for Neuroscience's annual meeting held in San Diego this week. The team hopes to use spinal cord and brain-imaging technology to extend their studies to determine if lesions are being healed in rats that received an ATL313 injection. "If we have a drug that is able to heal these lesions, this treatment could be a major breakthrough in how we treat the symptoms of MS in the future," Watkins said. The new findings were quite a surprise, as the researchers had originally wanted to look at the drug's potential in treating pain associated with MS. It is estimated that about 70 to 80 percent of MS patients suffer from chronic pain that is not treatable. "What we had originally thought about this class of compounds is that they would calm down glial cells in the spinal cord because their pro-inflammatory activation is what causes pain," she said. Under normal circumstances glial cells are thought to be like housekeepers in the nervous system, Watkins said, essentially cleaning up debris and providing support for neurons. Recent work by Watkins and others has shown that glial cells in the central nervous system also act as key players in pain enhancement by exciting neurons that transmit pain signals. "What's become evident is that glial cells have a Dr. Jekyll and Mr. Hyde personality," Watkins said. "Under normal circumstances they do all these really good things for the neurons, but when they shift into the Mr. Hyde formation they release a whole host of chemicals that cause problems like neuropathic pain and other chronic pain conditions." They discovered that ATL313 appears to reset the glial cells from an angry activated state to a calm anti-inflammatory state that may heal MS lesions. http://www.msfocus.org/news-details.aspx?newsID=742010-11-19T00:00:00-08:00Nuedexta™ (dextromethorphan hydrobromide and quinidine sulfate) has been approved in capsule form by the Food and Drug Administration (FDA) as the first line of treatment for uncontrolled laughing or crying, medically known as pseudobulbar affect (PBA), Avanir Pharmaceuticals Inc. has announced. An oral therapy, Nuedexta has shown in clinical trials to significantly reduce PBA episodes in people with MS, ALS and other disorders. PBA is a neurologic condition characterized by involuntary, sudden and frequent episodes of crying or laughing which are not proportional to the person’s true emotional state. PBA has been recognized as a symptom of MS. It is estimated that approximately 10 percent of the people with MS experience PBA. Avenir is reporting that one million Americans are moderately or severely affected with PBA.Dr. Erik Pioro, Cleveland Clinic, Director of ALS Section, also a researcher in the Nuedexta clinical trials, said: “PBA is a disabling neurologic condition commonly found in patients with underlying neurologic diseases or injuries. These patients frequently experience embarrassment due to their unpredictable emotional outbursts, leading to disruption of their interpersonal relationships and social isolation. As a physician who has cared for many patients with PBA, I am pleased that there is now a safe and effective treatment option for PBA that may help these patients regain more control over their daily lives and live with dignity.” For more information go to www.nuedexta.com. http://www.msfocus.org/news-details.aspx?newsID=732010-11-01T00:00:00-07:00An assay now commercially available throughout most of the country utilizes validated MS biomarkers to predict disease progression. Glycominds’ gMS™ Dx test for MS measures the level of anti-glycan antibodies in the blood. The test was developed following research findings suggesting that people with higher levels of specific anti-glycan antibodies either have MS or are likely to have more active MS leading towards higher EDSS scores despite treatment with standard first line drug therapies. There are two uses for the gMS Dx test, according to Glycominds, a molecular diagnostics company: The single marker diagnosis test lets physicians identify a person with clinically isolated syndrome who will likely convert to clinically definite MS. This marker is very specific (meaning the likelihood of a false positive result is very low, in some studies it is 100 percent specific), but will only pick up about 40 to 50 percent of people with MS. Therefore it can be used to "rule in" MS but cannot be used to "rule out" MS. The second test looks at four markers and identifies people who are significantly more likely to progress at least one EDSS score within five years despite treatment. These people can be candidates for more aggressive therapy or just very careful monitoring and switching therapy at the first time there is a clinical event when on therapy. Ben Thrower, M.D., MSF’s senior medical advisor, acknowledges the role of biomarkers and tests such as the gMS Dx in diagnosing and treating MS: “This blood test has been shown to be more common in people with MS as compared to other neurological conditions. So far the test does not appear to be sensitive enough to be used alone to diagnose MS, but could be used to help confirm the diagnosis. A negative blood test would not absolutely rule out MS,” he says. “In people presenting with their first MS relapse, high levels of the antibody were associated with less time until their next attack and a higher likelihood of progression of disability.” Any medical professional (doctor, qualified physician assistant, qualified nurse practitioner) can order the test just like any other diagnostic test they order. The test is provided at no cost to the person being tested, as Glycominds has committed to waiving deductibles and co-pays from insurance companies—except for those on Medicaid or Medicare. Those cases will be billed the standard co-pay for a blood test. For more information go to www.glycominds.com. http://www.msfocus.org/news-details.aspx?newsID=722010-10-29T00:00:00-07:00The American Academy of Neurology Foundation is accepting submissions for the 2011 Neuro Film FestivalSM and Contest. Make a film telling your story—or the story of a loved one—affected by MS (other brain disorders may also be featured). Help make the case for why more brain research is needed to find cures. Eligible entries could win up to $1,000 and a trip to see their films screened at the 2011 Neuro Film Festival contest held in Hawaii. You don't have to be an expert filmmaker to share your story. To enter, make a short video (up to five minutes long) telling the story about someone living with a brain disorder. Be sure to use the phrase "Let's put our brains together and support brain research. Visit www.neurofilmfestival.com" in your video. You will then upload your video to YouTube as a response to the 2011 Neuro Film Festival video and complete an official entry form. The deadline for submissions is Feb. 15th, 2011. For complete instructions and contest rules, go to http://patients.aan.com/go/about/neurofilmfestival. http://www.msfocus.org/news-details.aspx?newsID=712010-10-21T00:00:00-07:00The first oral treatment indicated for relapsing forms of MS, Gilenya™ (fingolimod), has been approved by the US Food and Drug Administration (FDA). Gilenya, previously referred to as compound "FTY720", will be available in US pharmacies in the coming weeks, according to the announcement made by Novartis. Novartis has also said it will offer educational support and reimbursement services for people who will be taking Gilenya. For more information, visit www.Gilenya.com or call 1-877-408-4974. http://www.msfocus.org/news-details.aspx?newsID=702010-09-22T00:00:00-07:00The MSF has found a new home. Our headquarters will be relocating, effective September 13, 2010. This new, larger location will allow our continued growth as a leading provider of services to the MS community. Our new address will be 6520 N. Andrews Ave., Fort Lauderdale, FL 33309. Our phone numbers will remain unchanged. Here's a first look at our new national headquarters: http://www.msfocus.org/news-details.aspx?newsID=662010-09-01T00:00:00-07:00Two new studies recently reported in the Annals of Neurology have cast doubt on the theory that a vascular condition known as chronic cerebrospinal venous insufficiency (CCSVI) contributes to the development of MS. The Annals of Neurology is a journal published on behalf of the American Neurological Association. Florian Doepp, M.D., and colleagues in Germany performed an extended extra- and trans-cranial color-coded sonography study on 56 MS patients (36 female; 20 male) and 20 control subjects (12 female; 8 male). The analysis included extra-cranial venous blood volume flow (BVF), internal jugular vein (IJV) flow analysis during Valsalva maneuver (VM), as well as tests included in the CCSVI criteria. Results showed that blood flow direction was normal in all participants, excluding one subject with relapsing-remitting MS. Furthermore, the research team noted that BVF in both groups were equal in the supine body position. In summary, the researchers determined that none of the study participants fulfilled more than one criterion for CCSVI. A second study by researchers at Umeå University in Sweden also concluded that CCSVI does not contribute to the development of MS. The Swedish research team led by Peter Sundström, M.D., Ph.D., tested the vital component of the CCSVI theory - the obstructed IJV flow - in 21 MS patients and 20 healthy controls using magnetic resonance imaging with phase contrast (PC-MRI). The researchers found no significant differences between the MS group and control group relating to total IJV blood flow. "Our study found no support for using endovascular procedures such as angioplasty or stenting to treat MS patients," Dr. Sundström says. Neurologist Ben Thrower, M.D., the MSF’s senior medical advisor, notes that interest in CCSVI and how it might relate to MS has been very high over the past several months. “Studies by doctors Zamboni and Zavadinov have shown that abnormal venous blood flow termed CCSVI is more common in people with MS versus control groups. There has also been great interest in treating CCSVI with angioplasty or stents. However, the MS/CCSVI theory has not been without its critics. These two studies will certainly add fuel to that criticism,” he says. “The two studies combined looked at 77 people with MS and found no evidence of venous blood flow abnormalities. Other studies are ongoing. Until the issue is sorted out a little more clearly, I would urge people to be cautious in pursuing the diagnosis or treatment of CCSVI outside of formal clinical trials,” Dr. Thrower says. http://www.msfocus.org/news-details.aspx?newsID=692010-08-04T00:00:00-07:00The Departments of Radiology and Neurology at SUNY Downstate Medical Center will hold a symposium on CCSVI (chronic cerebrospinal venous insufficiency) on Monday, July 26 from 9am to 4pm, in the Alumni Auditorium, 395 Lenox Road, Brooklyn, N.Y. 11203. While this free symposium is directed at physicians and other healthcare providers, members of the general public are invited and there will be a presentation on patient activism. CCSVI is a syndrome in which blood flow from the brain is compromised. While CCSVI is a disease state that by itself often requires intervention, it has been proposed that the syndrome promotes the development of MS. Speakers from the United States, Bulgaria, Italy, and Kuwait will present a thorough review of CCSVI, including the proposed relationship between CCSVI and MS. Salvatore J. A. Sclafani, MD, professor and chair of radiology at SUNY Downstate, has organized the symposium and will provide an overview of CCSVI for interventional radiologists. Those wishing to attend should respond in advance to CCSVISymposium@gmail.com. http://www.msfocus.org/news-details.aspx?newsID=682010-07-21T00:00:00-07:00Studies using gut bacteria to induce MS-like symptoms in mice have supported the concept that some bacteria and viruses can impact MS. The study was conducted at California Institute of Technology (Caltech) and led by researchers Sarkis K. Mazmanian, an assistant professor of biology at Caltech, and postdoctoral scholar Yun Kyung Lee. Mazmanian and his colleagues tried to induce MS in animals that were completely devoid of the microbes that normally inhabit the digestive system, but the sterile animals did not get sick. They then inoculated mice with bacteria that had been shown to lead to intestinal inflammation. The bacteria was also known to induce the appearance of a particular immune-system cell that causes an inflammatory cascade that leads to the animal model of MS, known as EAE. Giving the formerly germ-free mice a dose of one species of segmented filamentous bacteria induced this cell not only in the gut but also in the central nervous system and brain-and caused the formerly healthy mice to become ill with MS-like symptoms. "It definitely shows that gut microbes have a strong role in MS, because the genetics of the animals were the same," Mazmanian said. The biologists note, however, that the microbes aren't a direct cause of MS, but encourage conditions that could allow the disease to develop. "We would like to suggest that gut bacteria may be the missing environmental component," he said. "Perhaps treatments for diseases such as multiple sclerosis may someday include probiotic bacteria that can restore normal immune function in the gut... and the brain," Mazmanian added. The study appears online in the Proceedings of the National Academy of Sciences (ANI.) Ben Thrower, M.D., the MSF’s senior medical advisor called the report “very interesting,” noting that it is important to understand that the research does not indicate that an active infection with gut bacteria causes MS. “Other caveats would be that this is an animal EAE model, not human MS,” he says. “Otherwise, it does fit with our concept that some bacteria andviruses can impact MS by fooling the immune system through molecular mimicry. This leads the immune system to attack myelin as if it were a bacteria or virus. Another impact may be that this bacteria stimulates the immune system in people with MS leading, to an increase in symptoms (a pseudo-relapse.)”http://www.msfocus.org/news-details.aspx?newsID=672010-07-20T00:00:00-07:00What a wonderful time was had on this year's Cruise for a Cause, and what spectacular scenery! We know you had your cameras clicking! Cruisers, select your favorite photo from this year's Cruise and submit it for a chance to win cash prizes. But hurry, while we've extended the deadline, the contest ends Friday, August 6th. For complete rules and submission guidelines, see http://www.msfocus.org/pdf/2010-ALASKA-PHOTO-CONTEST.pdf. We can't wait to see your entries! http://www.msfocus.org/news-details.aspx?newsID=652010-07-19T00:00:00-07:00*Brighter Tomorrow Grant (BTG): Each year the MSF makes dreams come true for people with MS through this national program. The goal is to provide goods or services to improve the quality of life for people living with MS by enhancing safety, self-sufficiency, comfort, or well-being. In the past, BTG recipients have received adaptive sports equipment, appliances, exercise classes, hobby supplies, various home modifications, life chairs, musical instruments, and partial scholarships for the MSF Cruise for a Cause ®. Previous grant recipients are ineligible but applicants who were denied in the past may apply again. Applications are confidential and will be reviewed by the grant committee. Recipients will be notified after December 1, 2010. Applicants are asked to provide basic personal and financial information, and to write a brief essay of 100 words or less to describe how the grant would help them have A Brighter Tomorrow™. If you would like to apply for a BTG, simply fill out our online application (available July 1st) at www.msfocus.org, print an application, or call 888-673-6287 to receive an application by mail. Applications are also included in the summer 2010 issue of the MSFocus. By mail, completed applications can be sent to the MSF, BTG Committee, 6350 N. Andrews Ave., Ft. Lauderdale, FL 33309. Applications are accepted from July 1st to October 1st of each year. For further information on the BTG, call our Program Services Department at 1-888-MSFOCUS or you can contact us by email: support@msfocus.org. *Computer Grant Program: The Computer Grant Program provides refurbished laptop or desktop computers for individuals with MS on limited or fixed incomes. The application process requires verification of a diagnosis of MS and a brief essay from the applicant explaining how a computer will enhance their quality of life. Internet access and technical support will be the responsibility of the grant recipient. Applications are accepted from July 1 to October 1 of each year. If you would like to apply for a computer grant, simply fill out our online application (available July 1st) at www.msfocus.org, print an application, or call 888-673-6287 to receive an application by mail. Applications are also included in the summer 2010 issue of the MSFocus. By mail, completed applications can be sent to the MSF, Computer Grant Program, 6350 N. Andrews Ave., Ft. Lauderdale, FL 33309. http://www.msfocus.org/news-details.aspx?newsID=642010-07-01T00:00:00-07:00 The University of Buffalo has announced that researchers there, led by the department of neurosurgery, have embarked on a landmark prospective randomized double-blinded study to test the safety and efficacy of interventional endovascular therapy—dubbed “liberation treatment”—on MS symptoms and progression. Ever since Paolo Zamboni, M.D., of the University of Ferrara, Italy, proposed more than a year ago that a blockage of major venous outflow from the brain and spinal cord in people with MS (a condition known as CCSVI) may be associated with the disease, the MS community has been anxious for further studies to distinguish the role of CCSVI in MS. PREMiSe (Prospective Randomized Endovascular therapy in Multiple Sclerosis) is a study to determine if endovascular intervention via balloon angioplasty to correct the blockages improves MS symptoms or progression. PREMiSe is believed to be the first prospective randomized double-blinded study of balloon angioplasty for MS being performed in the US that has been approved by the University at Buffalo Institutional Review Board (IRB). Significant safeguards are reportedly in place to ensure careful determination of risks and benefits. In the first phase of the study,10 MS patients from the United States and Canada exhibiting venous insufficiency will undergo minimally invasive venous angioplasties to determine if the procedure can be performed safely. The procedures, scheduled for June 29th and 30th will be performed at Kaleida Health’s Millard Fillmore Gates Hospital in Buffalo, N.Y. The second phase of the study will randomize 20 MS patients to undergo either venous angioplasty or a “sham angioplasty” (a catheter will be inserted but there will be no inflation of the balloon). The treatment will be blinded in such a way that neither the person undergoing the procedure nor the clinicians evaluating the person will be aware which procedure was performed. If results suggest an appropriate safety profile and preliminary effectiveness, then researchers will approach the IRB for an extension of the protocol to study a larger number of people with MS to convincingly prove or disprove a causal relationship between CCSVI and MS. With CCSVI, it is hypothesized that the narrowing in the large veins in the neck and chest might cause improper drainage of blood from the brain, resulting in eventual injury to brain tissue. It is thought that angioplasty—a treatment commonly used by cardiologists and other endovascular surgeons to treat atherosclerosis—may remedy the blockages. Dr. Zamboni has further conducted preliminary studies suggesting the efficacy of venous angioplasty (“liberation procedure”) in the amelioration of MS symptoms.http://www.msfocus.org/news-details.aspx?newsID=632010-06-30T00:00:00-07:00The Energizer Kids Take Charge video campaign has announced the top 10 finalists in the contest that asked kids, “What happens when your toys run out of batteries?” The finalists’ videos are now available for viewing and voting at www.energizer.com/smartcharge. Each finalist has selected a charity to receive their portion of the $10,000 cash prize, which will be determined based on the percentage of votes his or her video entry receives. Voting runs through July 5, 2010. “The Kids Take Charge contest offered families the opportunity to flex their creative muscle with short, humorous videos and the freedom to select a cause important to each finalist,” said Jim Olsen, Vice President of Marketing for Energizer North America. “Thanks to these great entries our audience will be entertained as they come back daily to help a favorite charity win some money.” Young finalist Benjamin Kop selected the MSF as his charity. You can vote for Benjamin's video once per day from now until July 5!http://www.msfocus.org/news-details.aspx?newsID=622010-06-18T00:00:00-07:00The MSF is proud to partner with THE TOUR Championship presented by Coca-Cola through TICKETS Fore CHARITY, a fundraising program designed to generate revenue for local charities where PGA TOUR tournaments are held. The MSF is promoting the sale of tournament tickets with 100 percent of the net proceeds from the ticket sales going to charity. Fifty percent of the proceeds will benefit the MSF and 50 percent will benefit the East Lake Foundation, a program that helps families create a better future and a stronger community through quality education, affordable housing, and innovative programs that build strength now and for future generations. Ordering is easy: CLICK HERE to purchase tickets to THE TOUR Championship on behalf of the MSF. Select the quantity of tickets you would like to purchase and be sure to enter code TCMXUR to designate the MSF as the benefiting charitable organization. Provide payment information and you will receive a confirmation email, with your e-ticket attached, shortly thereafter. Please be sure to print out this ticket and present it at the gate in order to gain entry! For more information or if you have any questions, please visit www.AtlantaTFC.com or contact Chelsea Stewart at 404-370-8360. Sponsored by PGA TOUR, Inc., Registration #CH4537. Upon written request to PGA TOUR at 100 PGA TOUR Boulevard, Ponte Vedra Beach, Florida 32082, Attn: Legal Department, a full description of the TICKETS Fore CHARITY program and the activities of the charitable organization who will benefit from the TICKETS Fore CHARITY program, including a financial summary, will be provided. The ticket purchase is not tax deductible as a charitable contribution by the consumer.http://www.msfocus.org/news-details.aspx?newsID=612010-06-16T00:00:00-07:00The first oral medication to treat MS has moved one step closer to reality, as advisors to the Food and Drug Administration (FDA) have “generally recommended” Gilenia from Novartis as an initial treatment for MS. The recommendation passed by a 21-3 vote yesterday in Silver Spring, Maryland. The panel voted unanimously in favor of the pill’s safety and effectiveness. Though it is not required to do so, the FDA usually follows panel recommendations, and is scheduled to decide whether to approve Gilenia by September. The panel that made the recommendation consists of 25 medical experts not employed by the FDA. It has also recommended another study be completed that involves a lower dosage amount but does not feel approval should wait on those results. The current dosage is being recommended at 0.5 milligrams. The panel voted for studies to be completed with a dosage of .25 milligrams to determine the drug’s effectiveness at a lower, safer dosage. The new studies would take at least five to six years to complete. The FDA requires new drugs to have post approval studies completed as well. Those studies would include people who suffer from other ailments along with MS and determine if the drug side effects are more prevalent in those groups. Some of the side effects associated with Gilenia include a low heart rate, a slight decrease in lung function, and macular edema, an eye problem. The drug is designed to delay the debilitating effects of MS. Novartis is hoping to get their drug approved before their competitor Merck reveals its own version of an MS drug. The FDA is expected to make a final approval decision by September.http://www.msfocus.org/news-details.aspx?newsID=602010-06-11T00:00:00-07:00Postpartum administration of intravenous (IV) steroids significantly reduced the incidence of relapses in women with MS in a study conducted at the Baylor College of Medicine in Houston, Texas. Of the 52 patients in the study, 39 received postpartum IV steroids (methylprednisolone, 1 g), and 13 did not. During the first postpartum trimester, 18 percent of women who received IV steroids experienced relapses. The frequency of relapse was about 46 percent in those who did not receive steroids. In the second and third postpartum trimesters, relapse percentage was about 26 percent among patients who received steroids and 23 percent in those who did not. The retrospective analysis included 50 women with relapsing-remitting MS and two with secondary progressive MS who had experienced one or more pregnancies. Each pregnancy was considered an individual case. Examined data included MS type; number of relapses before, during, and after pregnancy (first, second, and third trimester postpartum); treatment history; breastfeeding duration; and postpartum IV steroid use.Seven patients had at least 1 relapse during pregnancy. Because MS is prevalent in young women, MS issues related to pregnancy are of concern, says Jose Avila, M.D., a neurologist and a postdoctoral fellow in MS at the Baylor College of Medicine, Houston, Texas. While pregnancy exerts a protective effect against relapses, they do increase in frequency during the postpartum period. According to the researchers who presented the study at the Consortium of Multiple Sclerosis Centers 24th Annual Conference, the mean relapse rate during the first trimester after delivery approximately doubles during the first trimester of pregnancy. "Other centers have done this using intravenous immunoglobulin, but it is more expensive and has other side effects," Dr. Avila, who presented the research at a poster session, told Medscape Neurology. "Our suggestion is to give 1 g methylprednisolone right after delivery," he added. "This opens the door to the validity of giving methylprednisolone postpartum. The next question is, should we give it every month during the first 3 months? I think we're also going to see people looking at giving IV immunoglobulin immediately postpartum," James P. Simsarian, M.D., director of the Multiple Sclerosis Program at the Neurology Center of Fairfax, Virginia, told Medscape Neurology. "[Postpartum treatment of MS patients] is something everyone should do, and eventually there will be protocols," Dr. Simsarian added.http://www.msfocus.org/news-details.aspx?newsID=592010-06-10T00:00:00-07:00Listen to His One-on-One Interview with the MSF Walter Williams, a founding member of the world famous O’Jays and a 2005 inductee into the Rock and Roll Hall of Fame, chose the day before World MS Day to announce that he has been living with MS for the past 27 years. In an interview with the MSF, Walter speaks candidly of his journey living with MS, touching on everything from the range of emotions he felt when diagnosed at the peak of his musical career, his reluctance to disclose the MS, his determination to “fight back”, and the importance of beginning early treatment. The O’Jays were pioneers of the 70’s soul music and are known for classics including “Love Train” and “Use Ta Be My Girl.” Williams has been performing with the O’Jays for nearly 50 years, and despite having MS he continues to tour the country. He will soon release his new album, “Walter Williams – Exposed.” Now 66, Walter says he believes that it is important to share his personal experience of how he has managed to continue leading an active lifestyle despite being diagnosed with the disease. Listen to the full audio here: http://www.msfocus.org/audios/Walter-Williams-Interview.mp3 http://www.msfocus.org/news-details.aspx?newsID=582010-05-28T00:00:00-07:00For individuals who have speech, language or cognitive changes due to MS: Researchers at the University of Washington are conducting a study exploring the impact of MS on participation in everyday communication activities (activities in which you are talking to people). This study is for people who have experienced changes in their speech or cognitive functions as a result of MS. Investigators are developing a questionnaire to be used in future research and in speech therapy clinics. The study needs participants to complete a set of questionnaires about living with the speech or cognitive changes due to MS. The information from this study will be used to test the questionnaire that is being developed. The information will also help researchers learn more about people’s experiences living with MS. Participants in this study will be asked to complete a set of questionnaires. You may fill these out at home on your own schedule. It will take you about an hour to complete all the questionnaires. You can take breaks as you need to and complete them at a pace that is comfortable for you. You may fill out these questionnaires online or on paper forms that will be mailed to you. You are eligible to participate if you are an adult age 18 years or older. You must have been diagnosed with MS at least three months ago. You must be living in the community (for example at home or in assisted living). Nursing home residents are not eligible for this study. You must use speech as your primary method of communication. You may use writing or augmentative devices to help you communicate, but most of your communication must be by speaking. It does not matter what kind of treatments you have had for your condition. Minorities are strongly encouraged to participate. You will receive $20 for completing the questionnaires (your choice of a $20 check or $20 gift card to Amazon.com). Participation in this study is voluntary. You are free to stop your participation at any time. Your participation is not related to any medical care you are receiving at any facility. Your participation is not related to your involvement in any support or advocacy groups. More information about this study is available at: http://staff.washington.edu/cbaylor. If you have questions or are interested in participating, you may use the contact method you prefer. If you leave a message, please include that you are interested in the “MS study.” Email: commpart@u.washington.edu (they cannot guarantee the confidentiality of information sent via email) Phone: 206-221-3563 (you may leave a voicemail with your mailing address if you would like a questionnaire mailed to you) Mailing address: Carolyn Baylor, Ph.D., Box 356490. Dept. of Rehabilitation Medicine, University of Washington, Seattle, WA 98195. http://www.msfocus.org/news-details.aspx?newsID=572010-05-27T00:00:00-07:00A small study analyzing the blood of healthy people who developed MS, along with the blood of those who did not, has uncovered “blood signatures” that may lead to a diagnosis of MS before symptoms appear, and consequently earlier and more effective intervention. "We are not yet able to treat people with MS to prevent the onset of the disease but knowledge is power," says Anat Achiron, a professor of Tel Aviv University's Sackler Faculty of Medicine and vice-dean of research at Sheba Medical Center. "Every time we meet a new patient exhibiting symptoms of MS, we must ask ourselves how long this has been going on. We can diagnose MS by brain MRI, but we've never been able to know how 'fresh' the disease is." If doctors can predict the onset of MS early enough, intervention therapies using immunomodulatory drugs or beta-interferon drugs that stave off MS symptoms might be used. Examining blood samples of twenty19-year-old Israelis who were inducted into the army as healthy soldiers, and the nine of them who later developed MS, Achiron and her team at Sheba were able to use a "high throughput analysis" using more than 12,000 gene transcripts expressions. The screening compared similarities and differences in the blood of those who developed MS and those who did not, eventually establishing biological markers. "Those who will develop MS will show a different blood signature from those who will not," says Achiron. "When we compared the gene expression signatures, we saw a similar pattern of the same working biological processes." These early genetic markers may now be used to test for MS up to nine years before healthy young adults start developing symptoms. And because MS is thought to have a genetic component and a tendency to be found in siblings, Achiron says the biomarkers can be used as a tool for brothers and sisters of people with MS. The goal is to learn more about the genetics of MS through this new discovery, with the hope that early intervention therapies may be more effective, and help advance medicine toward a cure, according to Achiron. Typically by the time a person notices symptoms, significant and irreversible nerve damage is already done.http://www.msfocus.org/news-details.aspx?newsID=562010-05-03T00:00:00-07:00Chronic cerebrospinal venous insufficiency (CCSVI) and its relationship to multiple sclerosis has been a subject of much discussion in the MS community in recent months. Soon you will have a chance to hear the latest CCSVI news directly from the doctor who first proposed treating CCSVI to relieve MS symptoms, as well as experts involved in the latest CCSVI research. On April 14th, the MS Society and the American Academy of Neurology (AAN) will hold a live web forum about CCSVI and MS. Open to anyone, the forum will begin at 12:00 pm (noon) Eastern Time. It will last 90 minutes. The event will cover what is currently known about CCSVI , what yet needs to be determined in order to prove the nature of its relationship to the MS disease process, and whether surgical intervention can improve the disease course. The panel will consist of the following speakers: Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy Dr. Robert Zivadinov, Associate Professor of Neurology at the University at Buffalo, State University of New York Dr. Andrew Common, Radiologist in Chief at St. Michaels Hospital, University of Toronto, Ontario, CA Dr. Aaron Miller, Professor of Neurology and Director of the MS Center at Mount Sinai, New York, member of the AAN Board of Directors, Chief Medical Officer of the National MS Society Here is the information and links you need to participate: Register now online (12 p.m. ET April 14) and ensure your system will support the live Web forum player. Questions for the panelists can be submitted online in advance of the live Web forum through Facebook or Twitter, or in real time through the live Web forum player. The recorded webcast will be available online after the event for those who are unable to attend.http://www.msfocus.org/news-details.aspx?newsID=552010-04-07T00:00:00-07:00A company that designs and creates educational programs to help doctors better treat their patients is looking for people with MS to participate in a survey. DKBMed, a non-accredited continuing education company, is working with the Johns Hopkins School of Medicine to develop new programs in multiple sclerosis. The main goal is to identify practice gaps in physicians’ treatment of patients with MS, and develop educational programs to close these gaps.This short survey focuses on your own knowledge of MS and how you feel about the neurologist that treats you, or your loved one. Your responses to this survey are completely anonymous. No personal information and No email addresses are collected by this system. To participate in the survey go to: http://www.surveymonkey.com/s/LDX8KPZ.http://www.msfocus.org/news-details.aspx?newsID=542010-03-23T00:00:00-07:00If you have ever thought about working for the Federal government but were unsure of how to apply for a job, you may want to take advantage of an upcoming opportunity. On April 26, 2010 the Office of Personnel Management (OPM) and the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) are sponsoring a historic day-long Federal Hiring Event for People with Disabilities in Washington, D.C. Representatives from many agencies will be reviewing resumes prior to the event, and inviting prospective candidates for interviews. To learn how to participate, review the “Hiring Event Information”, as well as the “Individuals with Disabilities” page, or “Veterans” page on USAJOBS.gov. You must submit your resume to the following email address: Hiringevent@opm.gov no later than March 24, 2010. Documentation supporting your disability (proof of disability and job readiness certification letters) and/or veteran’s status (VA letter and DD-214) can be provided with your resume, or at the time you are interviewed. To ensure the hiring process moves quickly and to expedite the agency's ability to make tentative offers, you are strongly encouraged to submit your supporting documentation along with your resume. Disabled veterans with less than a 30 percent rating or with non-service connected disabilities are encouraged to submit their resumes, along with proof of disability and job readiness. If you need assistance submitting your resume or have any questions regarding this event, including the type of documentation required please forward your inquiry to the following email address: Hiringevent@opm.gov. You will receive notification that your resume has been received. Agencies will review your resume and any supporting documentation provided. You may be invited to attend the Hiring Event via email for an interview with one or more agencies and for one or more available positions. Applicants who are scheduled for interviews must bring the required documentation to the Hiring Event, if not previously provided. http://www.msfocus.org/news-details.aspx?newsID=532010-03-19T00:00:00-07:00The U.S. Food and Drug Administration (FDA) has approved Botox (onabotulinumtoxin A) to treat spasticity in the flexor muscles of the elbow, wrist, and fingers in adults. A common symptom of MS which can appear in all extremities, spasticity has in the past been treated with Botox “off-label”. While “off label” use of properly prescribed medications is legal, insurance companies typically deny claims relating to medications prescribed for “off label” use. Botox prescribed to treat spasticity in these particular upper extremities will no longer be considered “off label”. “Muscles affected by spasticity have increased stiffness and tightness, which may lead to pain, difficulties with hygiene and other activities of daily living, and may affect how a patient looks,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “In clinical trials, treatment with Botox was found to be beneficial to patients with upper limb spasticity.” Botox works by temporarily blocking the connections between nerves and muscles, resulting in a temporary paralysis of the spastic muscle. Botox has a “boxed warning” that says the effects of the botulinum toxin may spread from the area of injection to other areas of the body, causing symptoms similar to those of botulism. Those symptoms include swallowing and breathing difficulties that can be life-threatening.The most common adverse reactions reported by patients with upper limb spasticity were nausea, fatigue, bronchitis, muscle weakness, and pain in the arms. Botox has not been shown to be safe and effective treatment for other upper limb muscles, spasticity in the legs, or for treatment of fixed contracture – a condition that affects range of motion. Treatment with Botox is not intended to substitute for physical therapy or other rehabilitative care. http://www.msfocus.org/news-details.aspx?newsID=522010-03-11T00:00:00-08:00Epstein-Barr Virus (EBV) has long been suspected of playing a role in the development of MS, and now the results from one large-scale study implicate EBV as a contributory cause of MS. Researchers from the Harvard School of Public Health, Walter Reed Army Institute of Research, and a team of collaborators have observed for the first time that the risk of developing MS increases substantially following infection with EBV. The study appears in an advance online edition of the journal Annals of Neurology and will appear in a later print edition. Hundreds of thousands of individuals not infected with EBV were followed up for several years through repeated blood samples collections. Researchers were then able to determine the time when individuals developed an EBV infection and its relation to MS onset. "The recruitment of individuals before they were infected with EBV and following up with them for several years is the critical methodological aspect that makes this study qualitatively different from all previous work," said Alberto Ascherio, senior author of the study and professor of epidemiology and nutrition at Harvard School of Public Health and professor of medicine at Harvard Medical School. EBV is a herpes virus and one of the most common human viruses worldwide. Infection in early childhood is common and usually asymptomatic. Late age at infection, however, often causes infectious mononucleosis. In the U.S., upwards of 95 percent of adults are infected with the virus, but free of symptoms. EBV has been associated with some types of cancer and can cause serious complications when the immune system is suppressed, for example, in transplant recipients. There is no effective treatment for EBV. This is the first study based on the longitudinal follow-up of several thousand individuals who were not infected with EBV at the time of recruitment. The study population was made up of active-duty US Army, Navy, and Marines personnel who have at least one blood sample in the Department of Defense Serum Repository. The electronic databases of the Physical Disability Agencies of the US Army and Navy were then searched for individuals whose records indicated a possible diagnosis of MS reported between 1992 and 2004. The researchers selected 305 individuals diagnosed with MS and who had blood specimens collected before the date of their diagnosis. Two controls for each case were then selected from the serum database and matched by branch of service, sex, date of blood collection, and age at time of blood collection. The study found that MS risk is extremely low among individuals not infected with EBV, but it increases sharply in the same individuals following EBV infection. "The observation that MS occurred only after EBV is a big step forward," said Alberto Ascherio. "Until now we knew that virtually all MS patients are infected with EBV, but we could not exclude two non-causal explanations for this finding: that EBV infection is a consequence rather than a cause of MS, and that individuals who are EBV negative could be genetically resistant to MS. Both of these explanations are inconsistent with the present findings," said Ascherio. The study was supported by a grant from the National Institute of Neurological Disorders and Stroke. http://www.msfocus.org/news-details.aspx?newsID=512010-03-10T00:00:00-08:00The MSF has launched a fun initiative called "Shine with Sunny" to encourage everyone with MS to particpate in National Multiple Sclerosis Education and Awareness Month (NMSEAM 2010. Through this initiative, the MSF is challenging people with MS to get outside their comfort zone and experience new people, places and activities. Joining them as they travel outside their comfort zone will be Sunny. A very cheery-looking sun character on a stick, Sunny is distributed in the Foundation’s 2010 NMSEAM Awareness Kits. Upon their return, they will send a photograph of themselves with Sunny, along with a short essay explaining what they did and how that took them outside their comfort zone. The MSF will choose 50 winning entries to receive T-shirts commemorating 2010 NMSEAM. Some will also be chosen to feature in MSFocus, the Foundation’s quarterly magazine. To order a free awareness kit fill out this form or email awareness@msfocus.org and get ready to “Shine with Sunny”. http://www.msfocus.org/news-details.aspx?newsID=502010-03-04T00:00:00-08:00“Ready, Set, Shine.” The MSF has chosen this theme for National Multiple Sclerosis Education and Awareness Month (NMSEAM) to acknowledge the many people with MS who have not only prepared themselves as much as possible for living with a chronic, unpredictable disease, but also have continued to lead active, fulfilling and productive lives. During NMSEAM, as well as all year long, we encourage everyone with MS to feel good about their achievements, to keep striving for more, and to keep “shining on.” During the month of March the MSF will be presenting an array of educational programs throughout the country, providing you with access to many MS experts who will bring you the latest information on how to stay active with MS. For information on those programs click here. No matter where you live, you can participate in our teleconferences on the topics of maximizing mobility and staying open to change. Click on Maximizing Mobility and Staying Open to Change to find out dates and times. http://www.msfocus.org/news-details.aspx?newsID=492010-03-03T00:00:00-08:00Too often, MS symptoms are left in the shadows. People don’t see your fatigue and depression and can’t feel your pain. They say you look good but have no idea what’s going on inside. It’s time to speak up for yourself and others with MS! This spring, the MSF will choose ten people with MS from around the country to serve as ambassadors. These people will become leaders in the MS community by: • Attending local and regional MSF events.• Speaking at support groups and health fairs.• Participating in public outreach. Those selected will have the chance to participate in leadership training to help them become advocates for MS awareness, and work closely with the MSF to help meet their advocacy goals. So, tell us how you would get the word out! Be creative – write an essay, record a video, include photos, or do a slideshow presentation. See full guidelines and application at http://www.msfocus.org/pdf/AmbassadorApp.pdf or in the current issue of MSFocus.http://www.msfocus.org/news-details.aspx?newsID=482010-03-01T00:00:00-08:00Living with MS can sometimes bog you down. To learn how to rev back up, come out to one of the many nationwide educational programs the MSF is hosting during National Multiple Sclerosis Education and Awareness Month (NMSEAM) in March and listen to MS healthcare professionals speak about how to “Remain Active, Manage Your Disease and Shine On.” In addition to getting useful information about living with MS, you will also be able to meet and have lunch with others who, like you, have MS and want to keep moving forward. Friendship opportunities await! Here is a listing of the programs by state. Space is limited, so please make a reservation with Gloria at 1-888-673-6287, ext. 126. Georgia: Speaker: Ben Thrower, M.D., Medical Director of the MS Institute at Shepherd Center, Atlanta, GA When: Saturday, March 20th Time: 11 a.m. registration, 11:30 a.m. program and lunch Where: Shepherd Center, 2020 Peachtree Road, Atlanta, GA Florida: Speaker: Jonathan O. Harris, M.D., Board Certified Neurologist, Neurological Consultants, P.A., Ft. Lauderdale, FL When: Saturday, March 20th Time: 11 a.m. registration, 11:30 a.m. program followed by lunch Where: Hilton Deerfield Beach/Boca Raton, 100 Fairway Drive, Deerfield Beach, FL 33441 Maryland: Speaker: Raul N. Mander, M.D., Certified Neurologist, American Board of Psychiatry and Neurology, in private practice, North Bethesda, MD When: Saturday, March 20th Time: 11 a.m. registration, 11:30 a.m. program and lunch Where: Residence Inn by Marriott, 192 Waterfront Street, National Harbor, MD 20745 Michigan: Speaker: Jayne Ward, D.O., Associate Professor of Neurology at Michigan State University When: Saturday, March 27th Time: 11:00 a.m. registration, 11:30 a.m. program followed by lunch Where: Kellogg Hotel and Conference Center, Michigan State University, 55 South Harrison Ave., East Lansing, MI 48824 Pennsylvania: Speaker: David E. Jones, M.D., Neurologist, Director of the MS Center of Lehigh Valley, PA When: Saturday, March 20th Time: 11:00 a.m. registration, 11:30 a.m. program followed by lunch Where: Hilton Scranton Conference, 100 Adams Ave., Scranton, PA 18503. Texas: Speaker: Annette Okai, M.D., Board Certified Neurologist, MS Treatment Center of Dallas, Baylor University When: Saturday, March 13th Time: 11:a.m. registration, 11:30 a.m. program and lunch Where: Hyatt Regency Dallas, 300 Reunion Blvd., Dallas, TX 75207 Washington: Speakers: Ted. R. Brown, M.D., MPH, Director of Neurorehabilitation, MS Center at Evergreen. Jeffrey Shaw, Psy.D., Neuropsychologist at Evergreen Hospital Also featuring: Kasey Minnis, MSF representative and Bill Brayer, MS Helping Hands Group Leader, MSF Ambassador When: Saturday, March 27th Time: 8:00 a.m. registration, 9:00 a.m. to 11:45 a.m. program, 12:00 p.m. lunch, 12:45 p.m. program. Where: Evergreen Hospital and Medical Center, Education Center Surgery & Physician’s Building, Tan 100/101 at 12333 NE 130th Lane, Kirkland, WA Virginia: Speakers: Mitzi Williams, M.D., Medical Director of the Augusta MS Center, Augusta, GA. Lara Stepelman, Ph.D., Director of the Psychological Services Program at the Augusta MS Center. When: Saturday, March 27th Time: 9:30 a.m. registration, 10:00 a.m. to 11:45 a.m. program and Q & A, 12:00 p.m. to 12:30 p.m. lunch, 12:45 p.m. to 2:30 p.m. program and Q & A. Where: Quality Suites Lake Wright, 6280 Northhampton Blvd., Norfolk, VA (for directions 757-461-6251). http://www.msfocus.org/news-details.aspx?newsID=472010-02-22T00:00:00-08:00Have a question on your mind about MS and mobility? Wish you had easy access to an expert who could provide you with the information you need? That chance is coming. “Maximizing Mobility: Small Changes Make a Big Difference” will be the topic of a teleconference hosted by the Multiple Sclerosis Foundation from 8 to 9 p.m. (EST) Tuesday, March 9th. In addition to answering your questions, panelists will provide lots of helpful information on easy adaptations you can make to keep moving with MS. Panelists include: Jodie Haselkorn, M.D., M.P.H., director of the department of veteran’s affairs at the MS Center of Excellence West in Seattle, Wash. Dr. Haselkorn is also a professor of rehabilitation medicine and an adjunct professor of epidemiology at the University of Washington School of Public Health and Community Medicine in Seattle. Janet Powell, occupational therapist and associate professor in the department of rehabilitation medicine at the University of Washington. She has more than 20 years of clinical experience working with adults and children with various neurological conditions, including MS. If you want to participate, call in directly at (888) 550-5602 and enter 2344 1168. You can also register to get a meeting reminder by phone or by email by emailing editor@msfocus.org or by calling (800) 225-6495, ext. 145.http://www.msfocus.org/news-details.aspx?newsID=432010-02-19T00:00:00-08:00Since your MS diagnosis, have you been afraid to try new activities? Have you withdrawn and become isolated? Want to break out of that same old routine but don’t know how? Too often the psychological aspects of life with MS are ignored and it can be difficult to know where to turn. Two experts on the topic have offered to answer your questions in a national teleconference hosted by the Multiple Sclerosis Foundation. "Outside the Comfort Zone: Staying Open to Change and New Experiences” will be the topic of a teleconference from 8 to 9 p.m. (EST) Thursday, March 25th. Panelists include: Lara Stepleman, Ph.D., licensed psychologist and an associate professor of psychiatry and health behavior at the Medical College of Georgia at the Augusta MS Center. She is the director of the psychological services program, which focuses on emotional wellness and quality of life for patients of the center and their loved ones. Yvette Rojas, executive director of the Louisville Comprehensive Care MS Center in Kentucky. She has been living with MS for more than 20 years. If you want to participate, call in directly at (888) 550-5602 and enter 2344 1168. You can also register to get a meeting reminder by phone or by email by emailing editor@msfocus.org or by calling (800) 225-6495, ext. 145. http://www.msfocus.org/news-details.aspx?newsID=442010-02-19T00:00:00-08:00Since your MS diagnosis, have you been afraid to try new activities? Have you withdrawn and become isolated? Want to break out of that same old routine but don’t know how? Too often the psychological aspects of life with MS are ignored and it can be difficult to know where to turn. Two experts on the topic have offered to answer your questions in a national teleconference hosted by the Multiple Sclerosis Foundation. "Outside the Comfort Zone: Staying Open to Change and New Experiences” will be the topic of a teleconference from 8 to 9 p.m. (EST) Thursday, March 25th. Panelists include: Lara Stepleman, Ph.D., licensed psychologist and an associate professor of psychiatry and health behavior at the Medical College of Georgia at the Augusta MS Center. She is the director of the psychological services program, which focuses on emotional wellness and quality of life for patients of the center and their loved ones. Yvette Rojas, executive director of the Louisville Comprehensive Care MS Center in Kentucky. She has been living with MS for more than 20 years. If you want to participate, call in directly at (888) 550-5602 and enter 2344 1168. You can also register to get a meeting reminder by phone or by email by emailing editor@msfocus.org or by calling (800) 225-6495, ext. 145. http://www.msfocus.org/news-details.aspx?newsID=452010-02-19T00:00:00-08:00A Fish Fry and Dance benefiting the Multiple Sclerosis Foundation will take place at 5 p.m., Sunday, Feb. 28th at the Sunshine Key RV Resort & Marina, 38801 Overseas Hwy, MM 39, Big Pine Key, FL 33043. A $10 donation per person is required to attend the dance and dinner, which will feature fresh fish caught locally by Captain Robert Veres, better known as “Captain Jersey Bob.” Among the highlights of the event: all-you-can-eat fresh fish prepared four different ways (the fish comes from the captain’s fishing expeditions), a magic show, comedian, raffles, door prizes, 50/50, goody bags, music and dancing. Though no alcohol will be for sale, BYOB is permitted. Captain Jersey Bob has organized the fish fry to benefit the MSF for the past six years. He will also be donating free, half-day fishing trips during the week of Feb.21-27 to anyone having MS. Contact Captain Jersey Bob for details and to purchase tickets at 305-872-2363http://www.msfocus.org/news-details.aspx?newsID=462010-02-19T00:00:00-08:00Researchers from Spain have proposed new criteria to replacing existing measures used to diagnosis multiple sclerosis. If adopted, the new criteria could lead to an MS diagnosis on the basis of a single MRI. The investigators’ recommendations, which have received mixed reviews from the medical community, are published in the February issue of Neurology. Less strict than the current criteria, the proposed criteria are designed to promote earlier diagnosis of MS in clinically isolated syndromes. The goal is to “simplify the existing MS diagnostic criteria, while maintaining a high specificity that is essential to minimize false positive diagnoses,” according to researchers led by Xavier Montalban, MD, from the Hospital Universitari Vall d'Hebron, in Barcelona, Spain. Because the current recommendations are complex, even neurologists may be overlooking cases of MS, the investigators say. However, some MS experts approach the idea of earlier diagnostics with caution. “There are both risks and benefits to an earlier diagnosis of MS,” says MSF Senior Medical Advisor Ben Thrower, M.D. “Risks include the potential for more inaccurate diagnoses. An earlier diagnosis may also lead to more patients starting therapy with expensive and inconvenient medications. Some would argue that a certain percentage of people with MS will follow a benign course and may not need early treatment.” For others, an earlier diagnosis could be beneficial. Says Dr. Thrower: “The benefits of establishing the diagnosis of MS sooner include peace of mind for patients and families when dealing with unexplained symptoms. Also, studies have shown fewer relapses and new MRI lesions in those who started there MS therapy sooner. These newly proposed guidelines will need to be studied further and compared to the existing McDonald criteria."http://www.msfocus.org/news-details.aspx?newsID=412010-02-16T00:00:00-08:00Recently released results from a phase 2 randomized study in people with active relapsing MS showed that adding the drug daclizumab to standard treatment with interferon beta reduces MS disease activity more than interferon beta alone. At 51 centers in the United States, Canada, Germany, Italy and Spain, 230 participants taking interferon beta were randomly selected to also receive either high-dose daclizumab (2 milligrams every two weeks), low-dose daclizumab (1 milligram every four weeks) or an inactive placebo. The combined treatments continued for 24 weeks. MRI scans were taken every four weeks between weeks eight and 24 of the study to assess the number of new or enlarged gadolinium contrast-enhancing lesions, which indicate MS disease activity. By the end of the study, the adjusted mean number of new or enlarged gadolinium contrast-enhancing lesions was 1.32 in the high-dose group (75 patients), 3.58 in the low-dose group (78 patients) and 4.75 in the placebo group (77 patients). Levels of CD56bright natural killer cells were seven to eight times higher in people taking daclizumab than in those taking the placebo. "This study provides confirmatory data that daclizumab treatment causes an expansion of CD56bright natural killer cells and adds support to the theory that expansion of CD56bright natural killer cells might mediate some of the effects of daclizumab on reducing multiple sclerosis lesion activity. In addition to the results of previous trials of daclizumab in multiple sclerosis, several lines of evidence have suggested a potential immunoregulatory function for CD56bright natural killer cells: they are expanded during conditions of natural immune tolerance, for example, pregnancy," the researchers from the Neurovirology Research Laboratory at the VA Medical Center in Salt Lake City, and the University of Utah, reported in a news release. The study was released online Feb. 15 in advance of publication in the April issue of The Lancet Neurology.http://www.msfocus.org/news-details.aspx?newsID=422010-02-16T00:00:00-08:00More than 55 percent of multiple sclerosis patients participating in the initial phase of the first randomized clinical study to determine if persons with MS exhibit a vascular condition known as CCSVI were found to have the abnormality. When the 10.2 percent borderline subjects were included in the "normal" category, the CCSVI prevalence was 56.4 percent in MS subjects and 22.4 percent in healthy controls. The results were reported today by neurology researchers at the University at Buffalo (UB). Robert Zivadinov, MD, PhD, UB associate professor of neurology and principal investigator on the study, says he is "cautiously optimistic and excited" about the preliminary data. "The data encourage us to continue on the same course," he says. "They show that narrowing of the extracranial veins, at the very least, is an important association in multiple sclerosis. We will know more when the MRI and other data collected in the CTEVD study are available." CCSVI, chronic cerebrospinal venous insufficiency, is a narrowing of the extracranial veins, causing restriction of normal outflow of blood from the brain. The hypothesis being tested is that this narrowing restricts the normal outflow of blood from the brain, resulting in alterations in the blood flow patterns within the brain that eventually cause injury to brain tissue and degeneration of neurons. This vascular condition was recently discovered and described by Paolo Zamboni, MD, from Italy's University of Ferrara. Zamboni's original investigation in a group of 65 patients and 235 controls showed CCSVI to be associated strongly with MS, increasing the risk of having MS by 43 fold. The UB study is one of the first to further explore the relationship between CCSVI and MS, a topic that has taken the MS community by storm. In the large MS cohort in the UB study, the presence of CCSVI did suggest an association with disease progression, a finding that was not shown in Zamboni's smaller cohort, Zivadinov notes. These initial reports from UB come from the first 500 participants in the Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD) study, which began at UB in April, 2009. Investigators are planning to examine 500 additional subjects, who will be assessed in the second phase of the study with more advanced diagnostic tools. Complete data on the first 500 will be presented at the American Academy of Neurology meeting in April. The analyses are being conducted by an independent statistician. The first 500 patients, both adults and children, were grouped based on their diagnosis: MS, clinically isolated syndrome (CIS) and "other neurologic diseases" (OND), in addition to healthy controls. All participants in the first phase underwent ultrasound (Doppler) scans of the head and neck in different body postures to view the direction of venous blood flow. MS subjects also underwent MRI scans of the brain to measure iron deposits in lesions and surrounding areas of the brain, using a method called susceptibility-weighted imaging. Iron findings on these images will be related to subjects' disability and neuropsychological symptoms. Of the total participants, 97.2 percent were adults, with the 280 MS patients comprising the largest disease cohort examined in the study to date. The majority of MS subjects were diagnosed with the relapsing-remitting form of MS. There were 161 healthy controls. Doppler scan results were reported on five specific criteria that affect venous blood flow. Patients who met at least two of the criteria were considered to have CCSVI. More detailed analysis of specific Doppler criteria and their association to disease status is underway. The finding that 22.4 percent of healthy controls also met two CCSVI criteria requires continuing investigation, Zivadinov says. http://www.msfocus.org/news-details.aspx?newsID=392010-02-10T00:00:00-08:00All who knew him, either personally or through his life’s mission to improve life with MS, are mourning the passing of Jimmie Heuga. Heuga died Monday at the age of 66. Though best known in the MS community as founder of The Heuga Center, which bore his name for 25 years before a recent change to Can Do Multiple Sclerosis, the sports world first took note of Heuga in 1964. It was then that he stunned the international skiing community by winning the bronze medal in slalom at the Winter Olympics. Heuga would prove to be a pioneer on and off the ski slopes. Though his first MS symptoms appeared in 1967, Heuga was not diagnosed with MS until 1970. At 26, he was at the peak of his skiing career. Not only did Heuga ignore his doctors advice to avoid physical activity (which was thought to cause exacerbation of symptoms) but he also went on to develop a MS treatment program of physical activity, goal setting, and psychological motivation. Wanting to share his program with others, Heuga founded The Heuga Center in 1984. He used the center to promote a philosophy of pursing total health – physical, mental and emotional. Though a challenge to conventional medicine of that time, Heuga’s total wellness philosophy has become a standard in MS care today.http://www.msfocus.org/news-details.aspx?newsID=402010-02-10T00:00:00-08:00Ampyra, recently approved by the FDA to improve walking in people with MS, will cost about $13,000 a year wholesale, according to figures released by Acorda Therapeutics. The exact pricing is $1,056 per 30-day supply. Ampyra, formerly called Fampridine, is expected to be available in March 2010. Wall Street analysts had anticipated the price tag to be in the $5,000 to $10,000 range. Ampyra is a version of a drug that has been available from compounding pharmacies for about $70 a month. Known as 4-aminopyridine or 4-AP, it has been available through prescription as an investigational drug. Acorda is offering assistance through Ampyra Patient Support Services, a resource for healthcare professionals and people with MS, to help healthcare professionals process prescriptions, work with insurance carriers, and direct people to available assistance programs. People who meet income and other requirements, regardless of their insurance status, may receive Ampyra at no cost. This may include individuals who have limited healthcare coverage. Healthcare professionals and people with MS can contact Ampyra Patient Support Services at 888-881-1918 from 8:00 a.m. to 8:00 p.m. (EST) for more information about Ampyra, and to learn more about the patient assistance and co-pay mitigation programs. http://www.msfocus.org/news-details.aspx?newsID=382010-02-03T00:00:00-08:00 In preparation for World MS Day on May 26, the Multiple Sclerosis International Federation is conducting an online survey to learn more about how having MS impacts employment. The survey, which generally takes less than five minutes to complete, is available in English and several other languages. A link to the survey can be found at http://www.msif.org/en/get_involved/world_ms_day_2010/ The goal of World MS Day is to raise awareness and mobilize the global MS movement. The focus in 2010 is employment and MS. The survey results will be released on World MS Day.http://www.msfocus.org/news-details.aspx?newsID=372010-02-02T00:00:00-08:00Applications are now being accepted for the MSF’s 2010 Cooling Program. A variety of free cooling accessories are offered, including bandanas, neckties, hats, wristbands and two types of cooling vests. Use these items during the hot summer months to prevent overheating, which can lead to weakness, fatigue, visual disturbances, and the exacerbation of other symptoms. While the heat does not cause your MS to worsen, it can alter the passage of nerve impulses and slow you down. All applications are confidential and will be reviewed by the grant committee. Applications can be submitted online or completed applications can be mailed to Multiple Sclerosis Foundation Cooling Program, 6350 North Andrews Ave., Fort Lauderdale, FL 33309. To find the application on this website, go to “Programs and Activities” and then click on “Cooling Program.”http://www.msfocus.org/news-details.aspx?newsID=352010-02-01T00:00:00-08:00The first in-human study has begun on an investigational drug that researchers hope will one day be an approved treatment to repair myelin destroyed by MS. The drug, Biogen Idec's anti-LINGO-1 antibody, is designed to block a protein called LINGO-1 that interferes with the body's production of myelin. In this Phase 1 trial, the safety and tolerability of the antibody, known as BIIB033, will be evaluated in 64 healthy adult volunteers in the Netherlands. In previous studies, the drug has shown promise in treating the effects of EAE, the mouse model of MS. More myelin growth occurred closer to the site of the antibody application in the mice, suggesting BIIB033 was responsible for the change. Regeneration would be significant for people who already have nerve damage from MS as well as those whose disease continues to progress regardless of treatment. http://www.msfocus.org/news-details.aspx?newsID=362010-02-01T00:00:00-08:00The U.S. Food and Drug Administration (FDA) has approved the marketing of Ampyra™ (dalfampridine, formerly known as fampridine SR), an oral medication to improve walking in people with MS. Acorda Therapeutics, which will market the drug in the U.S., expects Ampyra to be commercially available in the United States in March 2010. As of this time, the cost has not been reported. The announcement has been eagerly anticipated by the MS community: 2004 was the last time the FDA approved any therapy for MS. It is also the first therapy approved specifically to treat a MS symptom. Ampyra has been shown to improve walking ability in people with all types of MS. In two phase III clinical trials, 35 and 43 percent of people with MS experienced a consistent improvement in their walking speed, increasing it by about 25 percent. However, a spokesperson from Acorda said that since it is impossible to predict who will benefit from Ampyra, individuals should discuss with their doctors whether they should begin the therapy. The FDA has warned that Ampyra should not be taken by people with a history of seizures or by people having mild to severe renal impairment.Ampyra can be taken alone, or with existing MS therapies, including immunomodulator drugs, according to a press release. Dosage is a 10 mg table taken twice daily, approximately 12 hours apart. When Ampyra becomes available, it will be distributed exclusively through a network of specialty pharmacies and coordinated by AMPYRA Patient Support Services. Insurance coverage will depend on individual insurance plans. For more information, AMPYRA Patient Support Services can be reached at (888) 881-1918.http://www.msfocus.org/news-details.aspx?newsID=332010-01-25T00:00:00-08:00The U.S. Food and Drug Administration (FDA) has approved the marketing of Ampyra™ (dalfampridine, formerly known as fampridine SR), an oral medication to improve walking in people with MS. Acorda Therapeutics, which will market the drug in the U.S., expects Ampyra to be commercially available in the United States in March 2010. As of this time, the cost has not been reported. The announcement has been eagerly anticipated by the MS community: 2004 was the last time the FDA approved any therapy for MS. It is also the first therapy approved specifically to treat a MS symptom. Ampyra has been shown to improve walking ability in people with all types of MS. In two phase III clinical trials, 35 and 43 percent of people with MS experienced a consistent improvement in their walking speed, increasing it by about 25 percent. However, a spokesperson from Acorda said that since it is impossible to predict who will benefit from Ampyra, individuals should discuss with their doctors whether they should begin the therapy. The FDA has warned that Ampyra should not be taken by people with a history of seizures or by people having mild to severe renal impairment. Ampyra can be taken alone, or with existing MS therapies, including immunomodulator drugs, according to a press release. Dosage is a 10 mg table taken twice daily, approximately 12 hours apart. When Ampyra becomes available, it will be distributed exclusively through a network of specialty pharmacies and coordinated by AMPYRA Patient Support Services. Insurance coverage will depend on individual insurance plans. For more information, AMPYRA Patient Support Services can be reached at (888) 881-1918.http://www.msfocus.org/news-details.aspx?newsID=342010-01-25T00:00:00-08:00A Fish Fry and Dance benefiting the Multiple Sclerosis Foundation will take place at 5 p.m., Sunday, Feb. 28th at the Sunshine Key RV Resort & Marina, 38801 Overseas Hwy, MM 39, Big Pine Key, FL 33043. A $10 donation per person is required to attend the dance and dinner, which will feature fresh fish caught locally by Captain Robert Veres, better known as “Captain Jersey Bob.” Among the highlights of the event: all-you-can-eat fresh fish prepared four different ways, a magic show, comedian, raffles, door prizes, 50/50, goody bags, music and dancing. Though no alcohol will be for sale, BYOB is permitted. Captain Jersey Bob has organized the fish fry to benefit the MSF for the past six years. He will also be donating free, half-day fishing trips during the week of Feb.21-27 to anyone having MS. Contact Captain Jersey Bob for details and to purchase tickets at 305-872-2363. http://www.msfocus.org/news-details.aspx?newsID=322010-01-22T00:00:00-08:00Through the Looking Glass and its National Center for Parents with Disabilities and their Families has announced new scholarships specifically for high school seniors and college students who have parents with disabilities. Ten $1000 scholarships will be given out in fall 2010. The 2010 awards have different application procedures than those in previous years, with separate scholarship awards for high school seniors and for college students. Each has its own eligibility requirements. High School Seniors: To be eligible, a student must be a high school graduate (or graduating senior) by summer 2010, be planning to attend a two-year or four-year college in fall 2010 (pursuing an AA, BA or BS degree), and have at least one parent with a disability. College Students: To be eligible, a student must be currently enrolled in a two-year or four-year college in fall 2010 (pursuing an AA, BA or BS degree), be 21 years old or younger as of March 1, 2010, and have at least one parent with a disability. All application materials must be postmarked by March 1, 2010. Individuals may submit only one application per award period. Selection criteria for all scholarships include academic performance, community activities and service, letter of recommendation, and an essay describing the experience of growing up with a parent with a disability. Go to website: http://www.lookingglass.org/scholarships for more information, including the application form, complete application directions, and a FAQ page that answers many common questions as well as offers helpful suggestions. http://www.msfocus.org/news-details.aspx?newsID=312010-01-11T00:00:00-08:00 “Living with MS”, a free educational program in Spanish, will be presented 11 a.m., Feb. 6th at the InterContinental West, 2505 W. 87th Ave., Miami, Fla., 33172. The program is the first MS educational program to be offered by the non-profit organization MS News and Views. Featured speaker will be Dr. Angel Chinea, director of the MS Center in San Juan, Puerto Rico. Reservations are required and space is limited to first 85 people to respond. To obtain a confirmation number, reply by email to: Stuart@msviewsandnews.org. Registration is at 10:30 a.m., followed by the program and lunch at 11 a.m. http://www.msfocus.org/news-details.aspx?newsID=302010-01-06T00:00:00-08:00Recent reports from Italy that a correctible vascular condition may be the cause of MS, or contribute to its progression, have grabbed the attention of the MS community. However, many MS healthcare specialists are taking a “let’s wait and see” approach because the true significance of this research has yet to be determined. A vein condition dubbed Chronic Cerebrospinal Venous Insufficiency (CCSVI) has been the focus of research led by Paolo Zamboni, M.D., a former vascular surgeon and professor at the University of Ferrara. Zamboni has discovered, using ultrasound, that almost all MS patients he viewed had blocked or twisted veins in their necks and upper chest. Healthy people do not typically have this condition. In people with CCSVI, Dr. Zamboni theorizes, blood fails to properly drain from the brain and can even flow back upwards into the brain. There, the blood could be depositing iron, a substance that is toxic to the brain's grey matter. This excess iron could be what sets off a host of immune reactions -- and possibly, the symptoms of MS. He has tested a procedure he calls the "Liberation Treatment" that he says can open those blocked veins using a balloon inserted in the vein, in much the way surgeons repair coronary arteries in angioplasty. The hope is that the treatment allows blood to drain properly and arrests the progression of MS. While all preliminary research that leads to a better understanding of the cause and course of MS is interesting, people with MS should remember that much additional research and clinical trials are often needed to validate early findings, according to MSF Medical Advisor Ben Thrower, M.D. "This is interesting research that needs to be looked at in a larger study," Dr. Thrower says. "I would urge caution in pursuing any type of vascular therapy until we have a little more data. It is possible that the findings of venous insufficiency are true for some people with MS, but that does not necessarily mean that the venous changes cause the MS lesions. Another problem with the venous theory is that it would not account for the presence of MS lesions in the spinal cord, outside of the brain." Dr. Zamboni has begun publishing research on CCSVI, hoping to compel others doctors to take a look at his theory. His work caught the attention of Robert Zivadinov, M.D., at the University of Buffalo, who is also now conducting research on the prevalence of CCSVI. The Buffalo team, led by Dr. Zivadinov, plans to recruit 1,100 patients with MS and 600 other volunteers as controls who are either healthy or have neurological diseases other than MS.Using Doppler ultrasound, they will scan the patients to see if they can find any blockages within the veins of the neck and brain.If they can prove Dr Zamboni's theory of "chronic cerebrospinal venous insufficiency", they say it will change our understanding of MS.http://www.msfocus.org/news-details.aspx?newsID=292009-11-24T00:00:00-08:00 “African Americans with MS” is the newest addition to the MSF’s lineup of forums designed to meet the diverse needs of the MS community. Medical and healthcare professionals knowledgeable about the distinctions of MS in African Americans will answer your questions on a wide range of topics, including the medical, psychological, and cultural aspects of living with the disease. The forum will also serve as a venue for African Americans with MS to connect and share their experiences. Here’s a brief introduction to the doctors participating in the “African Americans with MS” forum: Mitzi Williams, M.D., is medical director of the Augusta MS Center and an assistant professor in the neurology department at the Medical College of Georgia. Annette F. Okai, M.D., is a neurologist at the MS Treatment Center of Dallas. Dr. Okai is board certified by the American Board of Psychiatry and Neurology. Lara Stepleman, Ph.D., is director of the MS psychological services program at the Augusta MS center. A licensed psychologist, she is an associate professor in the department of psychiatry and health behavior at the Medical College of Georgia. To submit a question for the doctors, go to www.msfocus.org. Click on “MS Community” and click on “Forums”.http://www.msfocus.org/news-details.aspx?newsID=262009-11-17T00:00:00-08:00 “African Americans with MS” is the newest addition to the MSF’s lineup of forums designed to meet the diverse needs of the MS community. Medical and healthcare professionals knowledgeable about the distinctions of MS in African Americans will answer your questions on a wide range of topics, including the medical, psychological, and cultural aspects of living with the disease. The forum will also serve as a venue for African Americans with MS to connect and share their experiences. Here’s a brief introduction to the doctors participating in the “African Americans with MS” forum: Mitzi Williams, M.D., is a neurologist and medical director of the Augusta MS Center at MCGHealth Center. She is also an assistant professor in the neurology department at the Medical College of Georgia. Annette F. Okai, M.D., is a neurologist at the MS Treatment Center of Dallas. Dr. Okai is board certified by the American Board of Psychiatry and Neurology. Lara Stepleman, Ph.D., is director of the MS psychological services program at the Augusta MS center. A licensed psychologist, she is an associate professor in the department of psychiatry and health behavior at the Medical College of Georgia. To submit a question for the doctors, go to www.msfocus.org. Click on “MS Community” and click on “Forums”.http://www.msfocus.org/news-details.aspx?newsID=272009-11-17T00:00:00-08:00Results from new study support recent data suggesting a higher lesion burden in pediatric MS than adult-onset MS. However, the latest study from researchers at the University of Buffalo (UB) also provides additional insight into the course of the disease: Indications are that patients with pediatric-onset MS -- which comprise up to 5 percent of total MS cases -- develop disabilities at a slower pace than patients with adult-onset MS. "Patients with pediatric-onset MS have three times as many relapses annually than patients with adult-onset disease, which suggests there is greater disease activity in this population," said Bianca Weinstock-Guttman, MD, associate professor of neurology in the UB School of Medicine and Biomedical Sciences and corresponding author. Weinstock-Guttman directs the Pediatric Multiple Sclerosis Center of Excellence located at Women and Children's Hospital, and the William C. Baird MS Center in Buffalo General Hospital. "But surprisingly, the average time to reach the secondary progressive phase of the disease is longer in patients who develop MS in childhood than in adult onset MS," she continued. "Reaching the next stage of disability is almost 10 years longer in pediatric-onset patients." The UB study involved four sets of patients: • 17 children with an average age of 13.7 who were diagnosed with MS 2.7 years earlier • 33 adults with an average age of 36.5 years who were diagnosed with pediatric MS 20 years earlier • 81 adults with an average age of 40 who have had MS for an average of 2.6 years • 300 adults with an average age of 50.5 who've had MS for 20 years All participants underwent a brain MRI scan, which measured two types of brain tissue damage: T1-lesion volume, which shows "black holes," or hypointense lesions, which are areas of permanent axonal damage; and T2-lesion volume, which shows the total number of lesions (lesion load) and overall disease burden. Both of these measures indicated that MS is more aggressive in children in the early stages, said Eluen A. Yeh, MD, UB assistant professor of neurology and co-director in the Pediatric Multiple Sclerosis Center. She is first author on the study, which was published online Nov. 5 in Brain. "Our findings, which are limited to a cross-sectional study design, suggest that children have a somewhat better reserve and functional adaptability than adults, but less support for a better remyelination process," said Weinstock-Guttman. "However, the remyelination process may require a more in-depth prospective analysis" She also said the data support the need for early diagnosis and therapeutic intervention in pediatric MS patients. http://www.msfocus.org/news-details.aspx?newsID=282009-11-17T00:00:00-08:00 The Heuga Center for Multiple Sclerosis is now Can Do Multiple Sclerosis. The name change was designed to reflect the center’s mission and passion to help more people with MS and their support partners use the power of health, wellness, and positive motivation to discover they are more than their MS. Can Do Multiple Sclerosis will work to make the organization more accessible, relevant and understandable in the fast-evolving world of health and wellness and MS care management. Additionally, the goals are to reach more people living with MS and to grow support for programs. Since its inception in 1984, the center has established itself as a leading provider of innovative, lifestyle empowerment programs for people with MS and their support partners. Founder Jimmie Heuga’s positive “can do” philosophy has helped thousands of people living with MS discover what is possible with MS. Heuga will continue to contribute to the mission in his new role as the first campaign fundraising and public education director for the Jimmie Heuga Center Endowment. And the organization will continue offering their highly-regarded programs, keeping the focus on the whole person with MS and his or her family. Programs teach education, nutrition, mental well-being, and exercise, as well as specific, individualized life management skills and ways to integrate wellness activities into everyday life. The programs help people set personal life goals as a focal point for reclaiming their lives, and then give them the strategies, confidence and support to strive for those goals. They are designed as a complement to regular medical treatment. For more information, visit www.heuga.org. http://www.msfocus.org/news-details.aspx?newsID=242009-11-09T00:00:00-08:00A study involving more than 200,000 women and conducted during a span of 40 years has concluded that teenage women who are obese may be more than twice as likely to develop multiple sclerosis (MS) as adults compared to female teens who are not obese. These findings were published in the November 10, 2009, print issue of Neurology®, the medical journal of the American Academy of Neurology. “Our results suggest that weight during adolescence, rather than childhood or adulthood, is critical in determining the risk of MS,” said study author Kassandra Munger, ScD, of Harvard School of Public Health in Boston. “Teaching and practicing obesity prevention from the start, but especially during teenage years, may be an important step in reducing the risk of MS later in life for women.” Munger said there are two possible explanations why obesity may affect MS risk. Higher levels of vitamin D in the body are thought to reduce disease risk. People who are obese tend to have lower vitamin D levels compared to people who are not obese. In addition, fatty tissue produces substances that affect the immune system and certain types of cell activities that are thought to be associated with MS. The research involved 238,371 women from the Nurses’ Health Study and Nurses’ Health Study II who were 25 to 55 years old. The women answered a questionnaire about their health behavior and medical information every two years. Over the course of 40 years, 593 developed MS. Participants reported their weight and height at age 18. Scientists then calculated their body mass index (BMI). The women were also asked to choose one of nine body silhouettes, ranging from very thin to extremely obese, to describe their body size at five, 10 and 20 years old. The study found that women who had a BMI of 30 or larger at age 18 had more than twice the risk of developing MS compared to those with a BMI between 18.5 and 20.9. A woman with a BMI of 25 to 29.9 kilograms per meter squared was considered overweight whereas a woman who was considered obese had a BMI of 30 or more kilograms per meter squared. The disease risk among women who were overweight but not obese at age 18 was only somewhat increased. The results were the same after accounting for smoking status and physical activity level. Women who had a larger body size at 20 years of age, represented by the use of silhouettes in the study, also had twice the risk of MS compared to women who reported a thinner body size. Larger body sizes at ages five and 10 were not associated with MS risk. The study was supported by the National Institute of Neurological Disorders and Stroke. http://www.msfocus.org/news-details.aspx?newsID=252009-11-09T00:00:00-08:00Editor’s note: In this news brief, MSF Medical Advisor Ben Thrower, M.D., addresses the topic of flu shots and the flu, including H1N1, for people with MS. It seems like everywhere you turn, there is news about the flu. What does all this mean for a person with MS? We need to clarify that there are two types of flu bugs being discussed. There is the common seasonal flu and there is the H1N1 or swine flu strain. Vaccines for these two forms of the flu come in both a nasal spray and injectable form. So, here are some general guidelines: 1) No person with MS should receive the nasal spray form of the vaccination. This form is a live attenuated (weakened) virus and is not recommended for people with MS. 2) People with MS who are on one of the beta interferons (Avonex, Betaseron, Rebif or Extavia) or Copaxone are not considered to be immunocompromised. The same is true for people with MS on no therapy. The risks and benefits of getting vaccinated for seasonal flu or H1N1 has to be looked at individually for these people. The risk of getting the flu is not higher in this group, but if they do get the flu, there is a good chance that MS symptoms will increase due to the infection. 3) Some people with MS may be considered to have lowered immune function. This would include people on immunosuppressive drugs like Tysabri, Novatrone, methotrexate, Cellcept, Imuran, Cytoxan and chronic steroids. These people should strongly consider getting vaccinated as they may be at higher risk for getting the flu. 4) The safety of the seasonal flu injectable vaccine has been established by the CDC for people with MS. We expect the safety of the H1N1 vaccine to be similar although in fairness the vaccine will not have been specifically tested in people with MS.http://www.msfocus.org/news-details.aspx?newsID=232009-10-19T00:00:00-07:00In recent years, Vitamin D has garnered the attention of MS physicians and researchers because epidemiological and laboratory studies have produced strong evidence that low vitamin D levels may play a role in causing MS. Now, leading researchers from around the country plan to converge in Boston to evaluate the feasibility of conducting what would be the largest clinical study ever undertaken to explore the role that Vitamin D may play in MS. The symposium, scheduled for Oct. 17th, is sponsored by the Accelerated Cure Project for MS (based in Waltham, MA) in collaboration with Dr. Benjamin Greenberg, deputy director of the MS Program at the University of Texas Southwestern Medical Center. Greenberg is also director of the new Transverse Myelitis and Neuromyelitis Optica Program at the university. The proposed study would evaluate the potential effects of vitamin D supplementation when administered early in the course of the disease. It would also result in the banking of thousands of additional blood samples into the Accelerated Cure Project’s MS sample and data repository for future use in understanding the causes and disease mechanisms of MS. The Accelerated Cure Project for MS has spent the past three years building the world’s largest shared multidisciplinary collection of biological samples and data from people with MS and other demyelinating diseases, as well as control subjects. In addition to supporting individual research efforts around the world with these samples, the Accelerated Cure Project is committed to orchestrating studies such as this one that it believes can “accelerate the cure by determining the cause.” For more information about the Accelerated Cure Project visit www.acceleratedcure.org.http://www.msfocus.org/news-details.aspx?newsID=222009-10-14T00:00:00-07:00If you have been diagnosed with MS for at least six months you may qualify to participate in a research study planned for September 30th in Ft. Lauderdale, Fla. Conducted by Plaza Research Ft. Lauderdale, the study will require you to attend a two-hour focus group meeting during the afternoon or evening. A $100 incentive is offered. Call (954) 963-7600 Monday through Friday between 9 a.m. and 5 p.m. to see if you qualify. Ask for someone working “multiple sclerosis”. All calls, if not taken immediately, will be returned on a first come, first served basis until the study is full. http://www.msfocus.org/news-details.aspx?newsID=212009-09-22T00:00:00-07:00What are the most important challenges facing people with MS today? That's the question the MSF is seeking to answer in a new survey. We are requesting that people with MS share their thoughts, in order to help us develop future programs and publications that meet the vital needs of the MS community. To participate in this short survey, please visit: https://app.icontact.com/icp/sub/survey/start?sid=3206&cid=263560http://www.msfocus.org/news-details.aspx?newsID=192009-09-16T00:00:00-07:00Current and former users of Tysabri are being asked to participate in an unofficial survey conducted by Stu’s Views & M.S. News, which is a product of the non-profit MS Views and News. To participate, click here: http://www.msviewsandrelatednews.blogspot.com/2009/09/un-official-survey-for-tysabri-users.com.html. Participants will be asked to answer several questions regarding their experience with Tysabri and their answers will be posted as comments on the blog.http://www.msfocus.org/news-details.aspx?newsID=202009-09-16T00:00:00-07:00The US Food and Drug Administration has given Novartis approval to market its MS medication, Extavia, for use in people with early and relapsing MS to reduce the frequency of clinical exacerbations. The therapy is also indicated for patients who have experienced a first clinical episode of MS and have features consistent with the disease as shown by MRI. A form of interferon beta-1b, Extavia is a copy of Bayer’s Betaseron. Novartis gained the rights to seek approval for its own branded version of interferon beta-1b through agreements with Bayer, and the company is paying royalties to Bayer. Extavia is already available in 12 European Union countries. Extavia is expected to be available in the US sometime this fall and it will be marketed with a support package including access to a nurse help-line, one-on-one injection training, and reimbursement support services. Novartis will also make auto injectors available to Extavia users. Novartis is counting on Extavia to help the company establish a presence in the MS community, paving the way for the introduction of its MS oral drug FTY720. Novartis has said it plans to submit FTY720 for US and European regulatory approval by the end of this year. http://www.msfocus.org/news-details.aspx?newsID=182009-08-17T00:00:00-07:00It's All About MEE. That's the motto of the MSF's educational programs, including the MSF Cruise for a Cause. Our goal is to Motivate, Educate, and Empower you. In that spirit, we'd like you to help select the itineraries for our future cruises. Where would you like to go? Let us know know by participating in a short survey. Completing the survey will take approximately two minutes, and will help us to determine which cruises our attendees would most enjoy. Click Here to Take the Survey!http://www.msfocus.org/news-details.aspx?newsID=172009-07-21T00:00:00-07:00Having a chronic illness such as MS, doesn’t mean you have to live with constant pain, fatigue, mobility problems, sleep deprivation and other obstacles to quality living. You can turn your life around by making positive lifestyle changes. Learn how to make those changes by participating in a live web chat with Elizabeth Ricanati, MD, medical director of the Cleveland Clinic’s Lifestyle 180 program, from noon to 1 p.m. Tuesday, July 21. Reclaim your vitality by learning better nutrition, exercise, and stress management habits. Dr. Ricanati is an award-winning women’s health and wellness specialist in the Department of Disease Reversal at Cleveland Clinic’s Wellness Institute. To register and submit your questions early, visit www.clevelandclinic.org/health/chatreg/. http://www.msfocus.org/news-details.aspx?newsID=162009-07-20T00:00:00-07:00This newly redesigned website was created with you in mind! So your comments and concerns are important to us. If you have feedback or trouble alerts, please email webmaster@msfocus.org.http://www.msfocus.org/news-details.aspx?newsID=152009-07-02T00:00:00-07:00Beginning July 1 and continuing until October 1, the MSF will be accepting applications for the Brighter Tomorrow Grant (BTG) Program. Each year, the MSF makes dreams come true for people with MS through this program by providing goods or services—valued at up to $1000 per recipient—to people with MS nationwide. The goal is to improve the quality of life for people with MS by enhancing their safety, self-sufficiency, comfort or well-being. Past recipients of the grant have received car repairs, ramps, wheelchairs, walkers, eyeglasses, appliances, televisions, furniture, therapeutic equipment, hobby supplies, retreats, and various home modifications. To qualify, a recipient must be 18 years of age or older and diagnosed with MS, or be the parent of a minor child diagnosed with MS. They must be a legal U.S. resident and must not have any other means of fulfilling their wish. Applicants are asked to provide basic personal and financial information, and to write a brief essay of 100 words or less to describe how the grant would help them. Requests made to the BTG Program must be for specific goods or services. Applications asking for cash and medications are not considered. Requests for items covered through other MSF grants—such as assistive devices and computers—will be referred to those programs. Applications will be made available on this website (click Programs and Activities, the Brighter Tomorrow Grant), in MSFocus magazine, or by calling 888-673-6287. Previous recipients of the BTG are ineligible for future BTGs but are welcome to apply for services through other MSF grant programs.http://www.msfocus.org/news-details.aspx?newsID=132009-07-01T00:00:00-07:00Applications will be accepted from July 1 to October 1 for the MSF’s Computer Grant Program. There is a world of support and information about MS to be found using a computer, but many people cannot access it. Because a technology gap still exists for people with disabilities, this grant program provides refurbished desktop computers and for people who have MS and have limited or fixed incomes. To meet approval for this grant, the applicant’s MS diagnosis must be verified. A brief essay from the applicant explaining how a computer will enhance their quality of life is also required. Internet access and technical support will be the responsibility of the grant recipient. Those who need training will be referred to computer literacy classes in their area. Refurbished computers come from schools, businesses and office buildings. The program offers only desktop computers of various models. If your computer is broken, the MSF may supply a new tower for use with your existing monitor and accessories. Applications for this grant are available online (click Programs and Activities, then Computer Grant Program), in MSFocus, or by calling 888-673-6287.http://www.msfocus.org/news-details.aspx?newsID=142009-07-01T00:00:00-07:00A small double-blind clinical trial involving patients with relapsing-remitting MS has indicated that a drug used to treat diabetes shows protective effects in the brain. At the University of Illinois at Chicago (UIC) College of Medicine, trial participants were given pioglitazone—a FDA-approved type 2 diabetes drug commercially known as Actos—or a placebo. They continued their normal course of therapy during the trial. After one year, participants taking pioglitazone, which is known for its anti-inflammatory effects, had shown significantly less loss of gray matter than patients taking the placebo. A report about the study was published in the online edition of the Journal of Neuroimmunology. Baseline values for lesions typically seen in people with MS were established with standard neurological tests and MRI scans at the start of the trial. The participants were evaluated every two months, and blood samples were taken. Repeat MRI scans were done after five months and again after one year. Of the 21 participants who finished the study, those taking pioglitazone had no adverse reactions. They reported that taking pioglitazone, which is administered in an oral tablet, was easy. "This is very encouraging," said Douglas Feinstein, research professor of anesthesiology at UIC. "Gray matter in the brain is the part that is rich in neurons. These preliminary results suggest that the drug has important effects on neuronal survival." Feinstein says a larger trial is needed to confirm these preliminary results, but in the meantime, researchers are trying to learn more about pioglitazone’s protective effect on neurons.http://www.msfocus.org/news-details.aspx?newsID=112009-06-03T00:00:00-07:00The University of Michigan Center for Managing Chronic Disease and Advocacy for Patients with Chronic Illness, Inc. is searching for people with chronic illnesses to participate in an online survey. The center has been awarded a grant by the National Institutes of Health (NIH) to study the obstacles facing the chronically ill and caregivers as well as interventions that do and do not work to surmount those obstacles. The study will also look at the ways in which work done by the NIH, including research and trials, may be helpful to people with chronic illnesses. To qualify for participation in the survey, you must have a chronic illness, such as MS, and be at least 18 years old. The survey, which was developed with the help of 12 people with chronic illness and caregivers, can be taken online at http://chronicdisease.survey.sgizmo.com. If for any reason you are unable to take the survey online, or you would prefer to be interviewed by telephone, or if you have questions about the research, contact Shelley Stoll at (734)764-7136. http://www.msfocus.org/news-details.aspx?newsID=122009-06-03T00:00:00-07:00 To recognize World MS Day on May 27, the MSF will host a MS Town Hall meeting on the topic ?Filling Unmet Needs in the MS Community.? Dial in at 8 p.m. EST to contribute your thoughts on the topic and ask questions of our panel of healthcare experts, MS advocates, and MSF staff, who will also briefly share their opinions on important needs in the MS community and how to address them. To participate, call in directly at (888) 550-5602 and enter 2344 1168. Register to get a meeting reminder by phone or by email by emailing editor@msfocus.org or by calling (800) 225-6495, ext. 145. Established by the Multiple Sclerosis International Federation, World MS Day will occur on the last Wednesday of May every year. For more information about World MS Day visit www.worldmsday.org.http://www.msfocus.org/news-details.aspx?newsID=12009-05-01T00:00:00-07:00 For nearly a decade, MSF has helped to connect the MS community to assistive technologies (AT) through our Assistive Technology Program. We are pleased to announce that MSF has taken that commitment one step further by becoming an Affiliate Partner of the MS Technology Collaborative, a joint-effort between Microsoft, the National MS Society and Bayer HealthCare Pharmaceuticals. Created in 2007, the Collaborative is dedicated to helping people living with MS overcome cognitive, vision, and dexterity challenges through the use of AT. The Collaborative?s home is www.MyMSMyWay.com, a comprehensive online resource built for the MS community by the MS community. With the guidance of a steering committee of nine people living with MS, MyMSMyWay.com has become a one-stop-shop for AT information and resources. Here, visitors can use the ?Snapshot? tool, a short quiz that provides customized technology solutions based on each individual?s specific needs. MyMSMyWay.com also offers user-submitted technology tips, a monthly column on how to incorporate AT into your daily life, and an abundance of information about specific types of AT that are available, including options that are affordable and at times even free. As an Affiliate Partner, MSF will work closely with the Collaborative, contributing content to MyMSMyWay.com and Helping to promote the Collaborative?s efforts to the MS community. One such project that we?re particularly excited about is the development of an online game designed specifically to address the cognitive challenges of people living with MS. Expected to launch in June 2009, this game is being developed in consultation with leading healthcare professionals as well as several members of the MS community. In the coming months, the Collaborative will look to the MyMSMyWay community to test the initial version of the game. Click here to register with MyMSMyWay.com and be one of the first to play this landmark game and provide your feedback. We look forward to our ongoing partnership with the Collaborative, which we?re certain will help us continue to bring critical information and resources to the MS community.http://www.msfocus.org/news-details.aspx?newsID=22009-05-01T00:00:00-07:00 The City of Miramar Presents the 1st Annual Gospel Hip-Hop Cultural Showcase and Summit on Friday May 22nd and Saturday, May 23rd at the Miramar Cultural Center/Artspark. In partnership with Dunamis Power Productions, this two-day event promises to stimulate, educate and uplift aspiring independent Hip-Hop/Gospel artist by providing "behind the mic" knowledge of the music industry. Local and international artists, including Grammy award nominee Vanessa Bell Armstrong and Dove Nominee Dooney Da Priest will share their art-form while simultaneously creating awareness of multiple sclerosis and the Multiple Sclerosis Foundation. The purpose of the Gospel Hip-Hop Cultural Showcase and Summit is to provide: 1. An incentive for youth and young adults to create and perform original positive or inspirational music. Target Audience: Middle and High School Students. Aspiring hip-hop artists, independent hip-hop artists, upload your original music, video clips and lyrics to www.sonicbids.com/ghcs to be selected to perform at the GHCS Talent Contest & Show with upcoming independent artists. Songs need not be gospel but must be positive. ? GHCS Talent Contest and Show ? Friday, May 22nd 7:00 pm-9:00 pm at the Miramar Cultural Center/Artspark. The winner will receive a cash prize award of $500, ride in a limo to the Red Carpet Preshow & Concert on Saturday evening, be interviewed on the Red Carpet and perform on stage with national artists. 2. Workshops that will enhance and/or begin careers of aspiring and independent artists. Target Audience: Anyone interested in a music career. ? Educational Summit - Saturday, May 23rd, 9:00 am-4:00 pm, Miramar Cultural Center/Artspark. Lunch is included. Participants will learn and discuss artist development, protecting your art through copyright, marketing strategies and other discussions. 3. Hip-hop music fans and the community at large can enjoy an alternative to mainstream hip-hop as they enjoy nationally known inspirational hip-hop artists. Target audience: Everyone ? Red Carpet Preshow and Concert ? Saturday, May 23rd, 7:00 pm ? 10:30 pm at the Miramar Cultural Center/Artspark. Performing in concert, Cross Movement Records presents two time Stellar Award Winner, Da? T.R.U.T.H. and Grammy Nominee, Ambassador. Also performing Dove Nominee Dooney Da Priest with his hit single, ?Pull Up Your Pants?. Grammy Nominee, Gospel Legend and spokesperson for Multiple Sclerosis, Vanessa Bell Armstrong will host the concert and perform. Prices ? Weekend Package $60 - Talent Contest & Show, Educational Summit including lunch, Red Carpet Preshow and Concert - $50 for a group of 20 or more ? Saturday, Educational Workshops Only - $50, $40 for a group of 20 or more ? Saturday Night, Preshow & Concert - $30, $25 for a group of 20 or more SPONSORS: ? City of Miramar ? The Mango Festival ? United Way of Broward County For more information, call the Fund Development Department at 800-225-6495.http://www.msfocus.org/news-details.aspx?newsID=32009-04-01T00:00:00-07:00 MSFocus.org is being upgraded! A re-design of our website is now underway, with exciting new features being planned. For the next few weeks, the MSF Forums - including the popular Ask the Doctor and Peer-to-Peer forums - will be closed for new posts. But don't worry - they'll return soon, new and improved! During this period, news and announcements will be posted to the staff blog at http://msf-staff.livejournal.com. Requests for materials from the MSF Lending Library may be made by email (support@msfocus.org) or phone (1-888-673-6287.) Thanks for your patience during this transitional period.http://www.msfocus.org/news-details.aspx?newsID=42009-03-23T00:00:00-07:00 The most important tool in raising MS awareness year-round may be...you. This March, the MSF is seeking eight people from around the country who are ready to be leaders in the MS community. By sharing your MS story, advocating for your MS-related cause and raising awareness in your community about the services the MSF provides, you can help improve the lives of other people with the condition. Those who are chosen as volunteer MS Ambassadors will receive leadership training through the MSF, and one will have the opportunity to tape a public service announcement about MS. For more information, or to apply, please see the winter edition of MSFocus, or click here.http://www.msfocus.org/news-details.aspx?newsID=52009-03-23T00:00:00-07:00 Bookings have begun for the next MSF Cruise for a Cause, an Alaskan tour in June 2010. Alaska's stunning scenery and cool temperatures make it an ideal setting for an accessible, enjoyable trip for people with MS of all abilities, as well as family and friends. Although the trip is still 15 months away, the Cruise can sell out quickly - especially the accessible cabins! This is a common occurrence on all our cruises. The 2010 Alaska cruise is the only official MSF Cruise for a Cause and will feature top educational speakers and engaging programs during days at sea, as well as support from the MSF staff. This year, an interest-free payment plan is available. For booking information or more details, see our MSF Cruise for a Cause page today.http://www.msfocus.org/news-details.aspx?newsID=62009-03-19T00:00:00-07:00 ?But You Don't Look Sick: Talking With Your Kids About MS? will take place at 8 p.m. EST Wednesday, March 11. To participate, click this link five minutes before the call start time at 8 p.m. Eastern (7 p.m. Central, 6 p.m. Mountain, 5 p.m. Pacific.) This link will help connect both your browser and telephone to the call. (Registrations are also being taken for the second MSF teleconference in March, ?Keeping Connected: Real World Advice for Couples Coping with Chronic Illness? with Dr. Fred Foley, scheduled for 8 p.m. EST on Wednesday, March 25. To register, please call (800) 225-6495, ext. 172.)http://www.msfocus.org/news-details.aspx?newsID=72009-03-11T00:00:00-07:00Talking about MS isn't always easy, no matter who the audience. But when it comes to questions from your kids, the conversation might seem even harder. If you're wondering how to talk about symptoms that come and go, the invisible effects of MS, or just wondering how and when to start the conversation, join the MSF for a free, national Q&A teleconference with guest speaker Dr. Paula K. Rauch, founding director for the Marjorie E. Korff Parenting At a Challenging Time (PACT) Program at the Massachusetts General Hospital's Cancer Center. But You Don't Look Sick: Talking With Your Kids About MS will take place at 8 p.m. EST Wednesday, March 11. To register, please call (800) 225-6495, ext. 172 . Registrations are also being taken for the second MSF teleconference in March, Keeping Connected: Real World Advice for Couples Coping with Chronic Illness? with Dr. Fred Foley, scheduled for 8 p.m. EST on Wednesday, March 25. http://www.msfocus.org/news-details.aspx?newsID=82009-03-09T00:00:00-07:00 Wearing skin patches, including those used to aid in smoking cessation, may pose a burn risk for people undergoing MRI, the FDA has warned. The agency has issued a public health advisory cautioning that aluminum and other metals used in the backings of some patches available over the counter or by prescription may conduct electricity during the procedure, resulting in a burn. The risk of a burn may not be raised on the package insert for such items, the FDA has warned. Patients undergoing MRI should inform healthcare staff if they wear a medicated patch prior to the procedure. For more information about this warning, visit www.fda.com.http://www.msfocus.org/news-details.aspx?newsID=92009-03-05T00:00:00-08:00 As part of its Betaplus patient support program, Bayer will refund a single copay for those who take Betaseron for 11 consecutive months. Under the new benefit, people who send in their prescription receipts for Betaseron will be refunded the copay for their 11th month of use of the drug, up to $500. The Betaplus program also has other options to save patients money, including monthly co-pay assistance for as long as a person is on Betaseron therapy and specialists who may be able to help obtain insurance coverage of the drug. The Betaplus program also offers access to MS nurses, email reminders about injection days, one-on-one injection training, and calls from peer mentors. For more information about the copay refund or other Betaplus programs, call 1-800-788-1467 or visit www.betaseron.com.http://www.msfocus.org/news-details.aspx?newsID=102009-03-04T00:00:00-08:00