Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24 Page 25 Page 26 Page 27 Page 28 Page 29 Page 30 Page 31 Page 32 Page 33 Page 34 Page 35 Page 36 Page 37 Page 38 Page 39 Page 40 Page 41 Page 42 Page 43 Page 44 Page 45 Page 46 Page 47 Page 48 Page 49 Page 50 Page 51 Page 52 Page 53 Page 54 Page 55 Page 56 Page 57 Page 58 Page 59 Page 60 Page 61 Page 62 Page 63 Page 6439 msfocusmagazine.org Life with MS Patient Powered Research By Laura Kolaczkowski Having multiple sclerosis can sometimes leave me feeling at a loss, wondering what my prognosis might be and what can I do to improve my immediate future. This question has come to me almost every day since I was diagnosed in 2008. It has left me looking for ways to help rather than just sitting back to wait for a cure. A powerful way I have found to help is by participating in iConquerMS™, a patient-led initiative that is working to change how research is being done. This online portal connects all of us and our MS health information, creating a one-of-a-kind resource for research. After registering at www.iConquerMS.org, you choose what information you would like to provide. Your identifying information is removed and the remaining medical information is put together to create the big picture of MS. This big picture includes all of us, regardless of what type of MS we might have, what drugs we take, or our age. The goal of iConquerMS is to guide research that is meaningful and effective for those of us with MS. With that goal in mind iConquerMS has a unique feature that you will find nowhere else – you can submit your own thoughts and research ideas. Has a researcher ever asked you what you want to have looked at in depth? Me neither! iConquerMS gives us the opportunity to change that picture and ask for answers to questions that are important to us. The majorityof people driving and shaping this initiative as members of the iConquerMS team have MS themselves. We also have representatives from the Multiple Sclerosis Foundation and other major MS advocacy organizations that are our partners in this initiative. This is a cooperative effort, and the Accelerated Cure Project, a nonprofit organization, oversees our efforts. This is the only way I know of that allows me to help shape research about questions that are important to me. As a member of iConquerMS, I am fueling research. I do this by completing the questionnaires, sharing my ideas about research topics, and by providing input on research studies. I am especially excited to share that we will begin our first major research project this coming summerwith REALMS (Research Engagement About Life with MS). I hope you will join iConquerMS and help us tell theworldwhat REAL MS looks like. Joining is simple – go to www.iConquerMS.org/join. • Agree to the informed consent – I know it is lengthy, but we have to collect this consent because we are doing research and need to make sure that’s clear. • Complete, at your own pace, the basic surveys you will find through your personal dashboard. These surveys include basic information about you, your diagnosis and how living with MS affects you today. • After you have joined, you can also access the place where you can submit your own research ideas. Once you join iConquerMS, you can expect to receive emails about research ideas and studies that need your input. As studies are completed, resultswill be sharedwith members of the iConquerM community, with the anticipation that those findings might be applied to make our lives with MS better. You can make a difference in MS research today by joining iConquerMS. As a member of iConquerMS, I am fueling research.