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This digital version of the Multiple Sclerosis Foundations 2016 National MS Education and Awareness Month Booklet was made possible by a charitable contribution from AAAA TTTToooooooollllkkkkiiiitttt ffffoooorrrr tttthhhheeee MMMMSSSS CCCCoooommmmmmmmuuuunnnniiiittttyyyy 2 Dear Reader MS can place many obstacles in your path.With over 50 recognized physical and cognitive symptoms its a powerful and unpredictable force affecting your life.Your doctor helps you control it providing tools for symptom and relapse management as well as disease- modifying therapy. But MS affects more than your body and mind it can affect your finances your relationships your career even your independence. If the challenges of managing a disease like MS go beyond the symptoms you experience then the management of your disease must go beyond the walls of your neurologists office. This years National MS Education Awareness Month theme Beyond MS represents an effort to help you recognize barriers to enjoying your best quality of life and learn how to move past them. This toolkit is designed to help you best handle common issues faced by people with MS empowering you to gain access to needed care minimize the effect of MS on your finances and overcome obstacles to staying active. Use the advocacy tips and checklists provided to guide your efforts. You have many resources at your disposal. Weve outlined some of them for you on the pages that follow. Weve also provided information on some of the ways the MSF can help. We encourage you to learn about all the services we provide and call on us in times of need. With help and determination you can overcome many of the obstacles MS creates. Together lets break through those barriers and move Beyond MS. Sincerely The Multiple Sclerosis Foundation team 3 Just how expensive a disease is MS to manage The average cost of disease- modifying therapies for MS is 60000 per year in the United States. Though how much you personally pay depends on your insurance many other costs associated with MS can pile up Prescription medicine to manage symptoms such as fatigue depression bladder dysfunction etc. Visits to specialists for symptom management such as physical occupational or speech therapists psychologists or neuropsychologists urologists etc. Medical devices and assistive technologies mobility aids orthotics computer aids driving aids etc. Secondary costs such as increased gasoline usage for doctor and pharmacy visits increased home cooling costs due to heat sensitivity increased electric costs from charging power mobility aids premiums for long-term care insurance. In addition to incurring additional costs those with MS may experience a decrease or loss of income because of disability or a need for vocational rehabilitation. Budgeting doesnt have to be complicated. See the Resources section for free budgeting tools and sources that offer sound financial management advice. 4 Moving Beyond Financial ChallengesMoving Beyond Financial Challenges Even though the expenses incurred because of MS are unavoidable there may be ways to reduce them reduce other expenses to offset them or receive assistance. Managing these expenses requires looking at your income and expenses as a whole. Go through your financial ABCs assess budget cut. ASSESS In order to manage your expenses you must first know what they are. In this age of debit cards and online banking many of us are paying first and asking questions later. Experts recommend a look back period review and assess each expense for the last 30 to 60 days and then account for any expenses that only happen quarterly annually or on another predictable schedule such as your regular follow-up MRI property taxes or maintenance for your vehicle. It is difficult to account for the unpredictable nature of MS exacerbations therefore you might want to consider your past expenses and factor in savings for these unplanned costs. BUDGET A 2013 Gallup poll shows that less than a third of all Americans use a defined monthly budget to control their household expenses.Yet for many people a budget can help them to identify waste save money and reduce the stress of financial uncertainty. Prepare a household budget outlining all your regular expenses compared against your total income.This will give you a basis to explore what expenses can be reduced or eliminated on your own or through assistance programs. CUT Cutting your expenses doesnt mean giving up all comfort convenience and entertainment. While you may identify some true waste in your spending for example paying for magazines you rarely have time to read it is more likely that you may identify spending leaks where you are paying more than necessary. For example are you paying for services on your landline phone such as call waiting call forwarding or even long distance calling when you use your cell phone for those services Depending on your local emergency system and the location services available through your cellular phone provider you may still need a landline but by reducing it to only minimal service you can save significantly on your monthly expenses. Search for Spending Leaks in your favorite search engine to learn of other common leaks and how to stop them. Here are some spending leaks specifically affecting those with MS and suggestions for fixing them 5 Electricity During the warm months air conditioning is critical to those with heat sensitivity but this can drive up your bill. This is particularly true for those in older homes where small cracks or missing seals may cause energy loss of up to 20 percent. Call your local power company and inquire about programs offered. Many companies allow you to balance your payments during the course of the year. Some offer discounts on your bill or disconnection protection if you are disabled so your power cannot be cut off for late payment. Most power companies offer a free energy survey to determine how efficient your home is and what can be done to improve it. Some also offer partial or full reimbursement for making your home more energy efficient. Finally see if you qualify for the federal Weatherization Assistance or Low-Income Home Energy Assistance Programs. Health insurance Not long ago whether using private insurance or Medicaid Medicare we may have had little choice in our health insurance provider.Today our options have changed as should our mindset about choosing health insurance. Become a comparison shopper for health insurance. If you are covered under a group plan such as through your employer or your spouses employer see if you qualify for a better rate through your state or federal exchange. Or see if the employer offers gap coverage to assist with deductibles and co-insurance. If you are covered through MedicaidMedicare and using a managed care or supplemental plan evaluate your plan choices during each enrollment period. For all types of insurance make certain you know what your plan covers. Many today offer discounts on gym membership vitamins and supplements alternative medicine and other items for which you might be paying full price. Medications Your disease-modifying treatment DMT is likely one of your more significant monthly expenses. But it is not the only medication on which you can save. Each DMT has a patient support service through which you can apply for assistance with the cost of your medicine. However many other brand-name medications also offer this service. Ask your doctor if a generic medication would be suitable and is it covered by your insurance plans formulary wherever possible but when a brand name is required regardless of the type of medicine check the pharmaceutical companys patient support website to see if you qualify for assistance. K Assess my spending for 30 60 days. K Create a budget including periodic expenses. K Identify possible spending leaks. K Call my telephone cellular power or cablesatellite provider to see if I can reduce my monthly bill. K Visit Benefits.gov to learn if I qualify for the federal Weatherization Assistance Program or the Low-Income Home Energy Assistance Program. K Find my open enrollment date for health insurance and comparison shop to ensure the best price. K Read my insurance plan benefits information to learn what is covered. K Make a list of all my medications and determine which are brand-name. K Discuss with my doctor whether comparable medications are available in generic formulations. K Apply for copay assistance through my medication manufacturers patient support program. K Call MSF to learn about and apply for programs that may help with my other MS-related expenses. 6 ResourcesResources BudgetingBudgeting Personal FinanceDuke personalfinance.duke.edu Developed by Duke University to promote financial literacy among college students this excellent resource provides sound advice for all. MyMoney mymoney.gov This website from the Federal Financial Literacy and Education Commission provides a number of helpful tools including budgeting worksheets and a savings calculator. Reducing SpendingReducing Spending Smart About Money smartaboutmoney.org Under the heading 10 basic steps to help you get started and get smart about money click on Ways to Save Money in the drop-down list for terrific advice on plugging spending leaks and other ways to save from the National Endowment for Financial Education. Health InsuranceHealth Insurance Plan and Price Information healthcare.gov Did you know that you can see plan and price information for the federal exchange without a lengthy application process From the home page click Get Answers. Under Saving Money select Will you save Do a quick check. Medicare Plan Finder medicare.gov The Plan Finder tool on Medicare.gov allows you to find appropriate plans with just a few short questions including the name of your current provider what medicines you take and what pharmacy you use if you select that you have prescription coverage. From the home page click Sign UpChange Plans then Find Health Drug Plans to reach the tools. MedicineMedicine Patient Assistance Program Center rxassist.org A searchable database is available of more than 150 patient assistance programs from drug manufacturers. Search by medicine name or company name. 7 8 MSF ServicesMSF Services The MSF offers many programs to help you pay for items that may be outside your budget but would improve your quality of life. Assistive Technology Program This program provides full or partial funding for a wide range of devices that may allow you to function more independently at home school work and during recreation. These include mobility devices home and vehicle modifications computer aids orthotics aids for visionhearing and more. Computer Grant Program For those with MS a computer in the home means access to information educational programs and support. If you dont have a computer or if your computer breaks and you cannot afford to repair or replace it the MSFs Computer Grant Program can help. Patient Assistance Grant Program If an exacerbation or medical expense causes you to fall behind on your bills and you are at risk of eviction or having your utilities cut off where do you turn This one- use-only emergency assistance program covers urgent needs to maintain housing and safety including rent or mortgage and utilities for qualified applicants. FOR MORE INFORMATION ON THESE AND OTHER PROGRAMS SEE WWW.MSFOCUS.ORG AdvocacyAdvocacy Through self-advocacy you can reduce your own costs but what can you do to advocate for change for all Here are two organizations that will help Universal Access Declaration AccessOurMedicine.com Sign and share the Universal Access to Medicine declaration and follow AOM to learn about other ways to get involved. National Disability Rights Network ndrn.org Under Advocacy click Legislative Action Center to find out what issues are currently before lawmakers. Use the Write to Congress tool on the right to find your representatives and let them know your stand on issues that affect the disabled and those with chronic conditions. 9 Hurdles to Accessing Quality CareHurdles to Accessing Quality Care MS is a difficult disease to diagnose and treat. With more than 50 recognized symptoms no single healthcare provider can offer all the types of treatment that may be required over the course of a life with MS. Additionally the treatment of one symptom may often affect the status of another. For example a medication given for depression or spasticity might worsen a persons levels of fatigue. This complexity typically requires what is referred to as a multidisciplinary approach a team of healthcare providers from different disciplines working together to provide the person with MS comprehensive care. For this reason an increasing number of healthcare facilities are forming centers specifically devoted to the care of MS. An MS center offers a wide variety of services in addition to those provided by a neurologist June Halper chief executive officer of the Consortium of Multiple Sclerosis Centers says. Nursing care mental health support and rehabilitative services may be provided by a team. Usually a center offers access to participation in research as well. To find a MS center near you use the CMSCs directory at www.mscare.org. However even among those who have access to a comprehensive care center hurdles to access may arise. Some may have difficulty getting insurance authorization of services. Others may not be asked during their neurologist visit about symptoms that would normally lead to a referral to another specialty. How can you ensure you receive the best quality of care 10 Moving Beyond Basic MS CareMoving Beyond Basic MS Care Hurdle 1There is no comprehensive MS center in my area. Explore other options for multidisciplinary care. Some choose to visit out-of-area MS centers annually and coordinate recommended follow-up care through their local neurologist or general practitioner. Others choose neurologists who belong to a healthcare or hospital system that connects them with other specialties. In some places particularly rural areas telehealth is increasingly an option where visits are conducted through video conferencing. Wherever possible select a neurologist who specializes in MS. Typically these neurologists will be aware of specialists in related fields who are knowledgeable about the condition. If your healthcare provider is not sufficiently familiar with the specialists in your area to recommend one for the care you need contact the MSF or CMSC for a referral or visit your local MS support group and ask for personal recommendations. Hurdle 2 My health insurance wont cover the treatment or test. A lack of knowledge about MS may sometimes prevent insurers from understanding the medical necessity of certain services. For example if a plan does not have vision coverage the insurer may question the need for ophthalmology services related to visual symptoms of MS. Many times this failure to understand medical necessity can lead to a failure to receive pre-authorization or a declined claim. Often your doctor explaining the medical necessity of a service is all that is required to resolve the issue. Of course there are other reasons your insurance company may decline to cover a service but whatever the reason dont feel you have to take no for an answer. The law gives you the right to appeal both internally a review of your claim by the insurance company itself and externally where the claim is reviewed by an independent third party. According to Kaiser Health News around 50 percent of all appeals are successful. To find a MS specialist use the American Academy of Neurologys search tool at patients.aan.comfindaneurologist. 11 Here are some tips to help you avoid or address problems with access to care through health insurance Know what your plan covers. Most insurers make this information available on the plans website. If you have questions about a service that is not listed call the insurer to be certain. Ask whether pre-approval or pre-authorization is necessary for services you havent used before. Make certain that authorization has been provided before you go for the service. Know how many visits are allowed. Certain services may have a cap on the number of visits particularly therapy services physical occupational speech or mental health. Work with your therapist to maximize your treatment during that number of visits. If the therapist feels it is medically necessary for your treatment to continue after the cap is reached you can appeal the cap. Ask for explanations. According to the American Medical Association an average of 9.5 percent of medical claims processed by private insurers contain errors. So when coverage is denied dont accept the simple answer. If you are told a claim is deemed not medically necessary not covered under your plan etc. probe a little deeper. Ask why. Dont hesitate to politely ask to speak to a supervisor or someone who can explain the companys position to you. Be detailed. Keep track of who youve spoken to at your insurance company and what was said. If cognitive issues prevent you from doing so use a speakerphone and ask a family member or friend to take notes.You will need this information to understand the companys case and form the basis for your appeal. Hurdle 3 I dont know when to ask for a referral. Office visits can go by very quickly and your doctor may not ask about every issue that is on your mind. It is important to speak up about any change in symptoms even if those symptoms are currently manageable. Early intervention by a specialist can often prevent symptoms from worsening. Some specialists can best serve you if youve had an evaluation soon after your diagnosis. This evaluation serves to establish a baseline and helps to monitor any changes over time. Other specialists are only needed when new or changing symptoms affect your health or ability to function independently. It may be difficult to gain insurance pre-authorization for baseline evaluations. Some providers choose to wait for the first report of symptoms to refer you to a specialist. This approach requires you to be active in noting and communicating changes in functioning to your healthcare provider. 12 Specialist Baseline When to request a referral evaluation Neuropsychologist Yes When cognitive problems are suspected or apparent including issues with memory concentration information processing speed etc. Speech Language Yes Often subtle changes in cognition speech Pathologist and voice occur early in MS that are effectively treated with a home exercise program. If changes in swallowing occur early intervention can prevent worsening. Physical Therapist Yes As early as possible to initiate a home exercise program. Reinitiate if relapsesprogression create mobility dexterity strength or balance issues. Also when assistive technology orthotics or mobility devices are needed for proper selection and customizationfitting. Occupational When MS symptoms begin to interfere with Therapist ones job or activities of daily life including work driving household chores and self- care tasks. For fatigue management or cognitive rehabilitation. Psychologist If changes in mood or behavior begin to regularly occur worsen over time or are noticed repeatedly by friends and family. These can include symptoms of depression feelings of sadness or irritability difficulty concentrating or sleeping or a desire to be left alone or loss of interest in activities anxiety restlessness or feeling keyed up difficulty concentrating irritability muscle tension sleep disturbances or more serious symptoms such as sweaty palms chest tightness or shortness of breath or pseudobulbar affect uncontrollable or inappropriate bouts of laughing or crying. Urologist When changes in frequency of urination frequency or retention or repeated urinary tract infections occur or for erectile dysfunction in men with MS. 13 Hurdle 1There is no comprehensive MS center in my area. K Evaluate my options for multi-disciplinary care K Talk to my current provider about herhis recommendations. K Check the CMSC website for a nearby MS center. K Use the AAN directory to find an MS specialist. K Call the MSF for referrals. Hurdle 2 My health insurance wont cover the treatment or test. K Read the documents explaining what my plan covers. K Get necessary pre-authorizations before treatment. K Request a thorough explanation of the reason for a denial. K Ask my doctors office to demonstrate the necessity of treatment. K File an internal appeal. K File an external appeal. Hurdle 3 I dont know when to ask for a referral. K Ask my doctor about early referrals K Does this area require baseline testing K Could treatment now prevent worsening K Ask for a referral when a symptom begins interfering with my life. 14 ResourcesResources Finding SpecialistsFinding Specialists American Academy of Neurology patients.aan.comfindaneurologist Select Multiple Sclerosis as the subspecialty and select your country and state to find MS experts near you. Consortium of Multiple Sclerosis Centers mscare.org The CMSC is the credentialing agency for MS certified specialists individuals with a demonstrated expertise in MS from a variety of fields including physical and occupational therapy psychology social work and other licensed fields of care. American Physical Therapy Association apta.orgfindapt The APTAs physical therapist search tool allows you to narrow your search to PTs who have experience working with neurological diseases. Call the particular therapists office to find out if their experience includes working with persons with MS. Insurance Claims and AppealsInsurance Claims and Appeals Your Rights Under the ACA healthcare.gov Healthcare.gov explains your rights and details the process for internal and external appeals. From the Get Answers menu select UsingYour Health Insurance Coverage under Health Insurance Essentials then Appealing an Insurance Company Decision. Further links as you read the material will guide you to detailed information about the process. Your Rights Under Medicare medicare.govclaims-and-appeals Medicare.gov explains the specific appeals process for Medicare Medicare Health Plans and Medicare prescription drug coverage. Patient Advocate Foundation patientadvocate.org The PAF is a national nonprofit organization that provides professional case management services to individuals with chronic illnesses. PAF case managers can serve as liaisons between you and your insurer or provider. MSF ServicesMSF Services The MSF offers many programs to help you access care that would otherwise be unavailable to you and to assist you in finding the care that you need. Homecare Assistance Grant Program In addition to conventional homecare and respite care this program can provide services including physical occupational and speech therapy. Healthcare Assistance Program For uninsured persons with MS this program provides a visit and a follow-up visit with their neurologist. It can also provide for routine dental care. National Toll-free Helpline MSFs support service coordinators are available from 830 a.m. to 7 p.m. Eastern time Monday through Friday to help you learn about and navigate available resources. FOR MORE INFORMATION ON THESE AND OTHER PROGRAMS SEE WWW.MSFOCUS.ORG AdvocacyAdvocacy Insurers seldom increase access to care of their own accord. Increased access comes through legislation and legislation springs from effective advocacy. Let your voice be heard as you demand better access to care These organizations can help. Multiple Sclerosis Coalition ms-coalition.org The MSC is a collaborative network of independent national MS organizations working together to leverage their resources for the greatest benefit to the MS community. Click Our Activities to learn about recent advocacy efforts and follow the MSC on Facebook or Twitter to get calls to action directly in your social media feed. Families USA familiesusa.org Families USA is a national nonprofit nonpartisan organization dedicated to the achievement of high-quality affordable health care for all Americans. Click Get Involved and look for the sign-up link under Take Action Now to receive Action Alerts. 15 16 If you are like most people with MS one of the most challenging aspects of the disease is how difficult it can be to maintain your active lifestyle. Symptoms such as fatigue spasticity and pain combined with gait or mobility changes can make it difficult to keep up your daily routine much less engage in recreation. Yet exercise and recreation are important areas of life. According to the American Therapeutic Recreation Association research supports the concept that people with active lifestyles will be not only happier but also healthier. Recreation and exercise have recognized physical cognitive emotional and social benefits. Disability brings its own set of challenges as you learn to navigate a world designed for the able-bodied. Much advancement has been made since the introduction of the Americans with Disabilities Act of 1990. Yet as those with disabilities well know this legislation did not solve all issues of accessibility. While some business or public buildings may be in flagrant violation of ADA laws more often they obey the letter of the law but not the spirit providing the bare minimum of accessibility features without regard to the convenience or ease of their use. For example a supermarket may provide electric carts for the use of disabled customers but fail to keep them charged or maintained. A restaurant may have the required hand rails in an accessible bathroom stall but the length of the stall may be insufficient to shut the stall door with a wheelchair inside. These poor attempts at compliance can lead to frustration and an inability to fully maintain your independence if not addressed. Moving Beyond Barriers to ActivityMoving Beyond Barriers to Activity Hurdle 1 My symptoms affect my ability to exercise and stay active. The first step is to examine what factors or combinations of factors are preventing you from engaging in physical and recreational activities. Once identified you can either work through the problem treating it with the help of your medical team or rehabilitative specialists or work around the problem engaging in adaptive exercise and sports programs or choosing other types of recreation that give you similar enjoyment or benefits. Very often the best success comes from combining medical and adaptive strategies. The following chart gives an idea of how you can put this approach into practice 17 Symptom How it affects me The medical The adaptive approach approach Fatigue I used to go to the Medication energy Exercise when I have gym after work but conservation training energy on my days now I have barely from an occupational off and on weekends enough energy to therapist exercise for shorter get through the day. periods more frequently. Balance I dont feel safe Physical therapy to Do seated and reclining Issue doing yoga anymore. improve balance. poses rather than Im afraid I might standing and balancing fall and get hurt. poses.Try chair yoga or ask my instructor to adapt poses for my safety. Weakness I love riding my bike Evaluate whether Try a recumbent but after my last caused by MS electric-assisted or relapse I no longer progression or hand-pedaled bike. have the strength. deconditioning. Physical therapy. Paralysis I can no longer ski Occupational Look into adaptive or run since I lost physical or seated skiing or the use of my legs. recreational therapy. wheelchair sports. Use the chart on the next page to list the factors that interfere with your exercise and recreation then ask your healthcare team and fitness professional to help you fill in the possible solutions 18 Symptom How it affects me The medical The adaptive approach approach Hurdle 2 Accessibility issues are interfering with my independence. While you have many rights under the Americans with Disabilities Act the regulations make it your obligation to request corrections or accommodations and to file a complaint if businesses are not responsive. The ADA applies to most government buildings public transportation and most public places including restaurants hotels theaters doctors offices pharmacies retail stores museums libraries parks private schools and day care centers. Private clubs and religious organizations are exempt. These facilities services and businesses cannot discriminate against disabled persons and must provide access for all. What if you encounter discriminatory practices or feel a business or facility might be in violation of ADA guidelines Use these tips to help you address the problem Document the issue if possible. Is the ramp to the store blocked by a sidewalk sale Does your hotels accessible shower require a step up Snap a photo with your cell phone. Also note the date time and name of anyone you spoke to about an incident. Go right to the top. Ask to speak to the owner or manager of the facility. Staff members frequently have no training in accessibility issues where the management may be more familiar with ADA regulations and have the power to make change. Be calm but firm. Access is your right. If a manager tells you there is nothing they can do about a broken electric cart for example ask what accommodation the store intends to make to allow you to access their services today.They may assign staff to serve as your personal shopper or even offer you home delivery. Also ask when the problem will be fixed. Follow up. If you encounter a problem and dont follow up youre simply making it the next persons problem. If the facility or business said they would implement changes check back to make certain they did. If they didnt or would not agree to make changes it is time to take it to the next level. File a complaint. The ADA is enforced by the U.S. Department of Justice.You can file a complaint online at httpwww.ada.govcomplaint. 19 20 Hurdle 1 My symptoms affect my ability to exercise and stay active. K Identify the activities you have difficulties accomplishing. K Talk to your doctor about medical interventions to help you. K Consider K Can this activity be modified K Is there an adaptive version of this activity available K Explore alternate activities you can enjoy. Hurdle 2 Accessibility issues are interfering with my independence. K Document the issue. K Identify the person with the authority to address the problem. K Request an accommodation andor correction of the issue. K Follow up to ensure the issue was corrected. K File an ADA complaint through www.ada.gov. Get practical advice from others with similar experiences find workout partners and encouragement or connect with fellow advocates by attending or hosting a support group. To find a group or affiliate your existing group with the MSF Independent Support Group Network or to learn more about the MSF support group program visit msfocus.orgsupport-groups.aspx. ResourcesResources Staying ActiveStaying Active NCHPAD Directories nchpad.orgDirectories The National Center on Health Physical Activity and Disability provides directories by state to help you locate accessible programs equipment and parks as well as organizations that may assist you. NCHPAD also provides a variety of helpful articles and videos. Disabled Sports USA disabledsportsusa.org Through a network of more than 100 community-based chapters in 37 states Disabled Sports USA provides access to more than 40 different sports including alpine and Nordic skiing snowboarding biathlon kayaking water skiing sailing scuba surfing rafting outrigger canoeing fishing hiking golf athletics archery cycling runningwheeling rock climbing equestrian and others for adults and children with disabilities. Accessibility and the ADAAccessibility and the ADA Americans with Disabilities Act ada.gov Learn about your rights under the ADA accessibility standards and enforcement. Use the site search to locate the Guide to Disability Rights Laws which gives a comprehensive view of federal laws governing access to fair housing air travel education voting locations and more. United States Access Board access-board.gov The U.S. Access Board develops and maintains design criteria for buildings sidewalks and streets transit vehicles telecommunications equipment medical diagnostic equipment and information technology.The board is also responsible for enforcement of these standards for federally funded buildings. MSF ServicesMSF Services The MSF can help keep you moving In addition to our Assistive Technology Program see page 8 these programs can help. Health and Wellness Program The Health and Wellness Program offers the opportunity to participate in various exercise fitness and alternative therapy programs in a structured setting led by qualified instructors. Techniques such as yogachair yoga Pilates therapeutic horseback riding and aquatics have been offered free of charge to those with MS across the country. Transportation Assistance Program This program provides assistance with reasonable paratransit fees for individuals who qualify. It may also assist with minor auto repairs. FOR MORE INFORMATION ON THESE AND OTHER PROGRAMS SEE WWW.MSFOCUS.ORG 21 22 AdvocacyAdvocacy Keeping proposed disability rights laws moving through our legislative bodies helps keep people with MS-related disability moving through life. Stay on top of the issues with these advocacy resources. National Disability Rights Network ndrn.org The National Disability Rights Network is an organization whose members work to improve the lives of people with disabilities by guarding against abuse advocating for basic rights and ensuring accountability in health care education employment housing transportation and within the juvenile and criminal justice systems. The Legislative Action Center under the Advocacy heading will help you learn about the issues before Congress. American Association of People with Disabilities aapd.com The American Association of People with Disabilities is the nations largest disability rights organization. Sign up for the Disability Download email newsletter to keep up with the latest disability news. American Civil Liberties Union aclu.orgissuesdisability-rights The ACLU works in the courts legislatures and communities to defend and preserve the individual rights and liberties guaranteed to all by the Constitution and laws of the United States. Visit the Disability Rights section to learn about current cases issues and actions. In ConclusionIn Conclusion The symptoms of MS emerge in ways unique to every individual. No two people diagnosed with MS experience identical effects on their bodies and their lives. So you personally may not require each and every resource outlined in this booklet. But like any good toolkit it provides you with the most commonly required tools. Use them to meet challenges you face and to stay in control of your life. Doing so will require you to become an advocate for yourself and perhaps others as well. Remember anyone can be an advocate it only requires a willingness to speak up and determination to persist until you achieve results.The MSF is here to help you and much help can be found from other members of the MS community who share your concerns and relate to the challenges you face. Regardless of where youre starting from no matter how many hurdles you have to overcome with help and persistence you can move Beyond MS. 23 To all our Beyond MS friends Do you enjoy fitness activities like yoga cycling spinning or aquatics Or participate in adaptive sports chair zumba chair yoga water aerobics or other athletic activities Do you have a close friend or family member who does Our Development Department is looking for volunteers who would love to fundraise for the Foundation but arent sure where to begin or who to contact. You may not realize it but organizing an activity to benefit the MSF can be as simple and enjoyable as arranging a special yogazumba aquatics session with your instructor or even going on a bike ride or walking around a track with some friends As a volunteer fundraiser for the MSF you can let your participants helpers and supporters know that 100 of the funds raised by your event go to direct assistance equipment aid and information to help other people with MS. Plus you will receive lots of support from our national headquarters banners MS wristbands social networking support Facebook Twitter Instagram and more.Well even provide you with a letter from our special events coordinator acknowledging the fundraiser so you can request supplies refreshments raffle items etc. from your local business community. If you are interested in finding out more about how you can help others with MS by coordinating a fundraiser that is both simple and fun for you or have any ideas or questions about how you can plan an event or activity to benefit the MSF contact Hildy Berger at 800-225-6495 ext. 121 or email hildymsfocus.org NATIONAL HEADQUARTERS 6520 NORTH ANDREWS AVENUE FORT LAUDERDALE FLORIDA 33309 MSFs support services coordinators are available from 830 a.m. to 7 p.m. Eastern time Monday through Friday to help you learn about and navigate available resources. NATIONAL TOLL-FREE HELPLINE 888-673-6287 WEBSITE www.msfocus.org EMAIL supportmsfocus.org ADMINISTRATION 800-225-6495 Funding for this booklet was made possible in part by grants from the following companies THE MSF IS RECOGNIZED BY THE IRS AS A 501C3 ORGANIZATION. CONTRIBUTIONS ARE TAX DEDUCTIBLE TO THE FULLEST EXTENT ALLOWED BY LAW.