Help Cure MS
Do you want to go beyond just treating your disease and do something to fight back against MS? I know I do, and that is why I am passionate about MS research and finding ways to help improve our lives through understanding my life with this disease. I want to look at my children and grandchildren and say I am doing all I can to stop MS.
My neurologist treats me using the knowledge gained from research studies about multiple sclerosis done across many disciplines, including drugs, physical therapy, emotional needs and much more. The doctor isn’t just guessing about my medical care – it is based on the truths found in research.
Thousands of people over several decades have volunteered to share their time through MS studies to come up with knowledge that I benefit from. Now it is my turn to volunteer to help advance the body of knowledge about MS, and it is your chance too!
I am excited to share a new MS research study for everyone to get involved with – it doesn’t matter what type of MS you have, your choice of drug therapy (or not!), how long you have had this disease or even where you live. Everyone is invited to volunteer and help with REAL MS™ - Research Engagement About Life with MS.
REAL MS™ is a longitudinal study to look at how we live with MS and we need everyone to help. It is a part of the iConquerMS™ patient powered research network, and I am deeply involved as the lead patient representative and co-investigator.
In the next few weeks you will see more about REAL MS™ in news from the major MS advocacy organizations because they are also partners with us and know the value of patient reported outcomes, the type of information gathered in this study. They know only people who live with MS can tell what life with MS is really like.
The people involved with iConquerMS™, including many of the people here that you are familiar with from MultipleSclerosis.net (Lisa Emrich, Marc Stecker, Christie Germans and Stephanie Buxhoeveden), know the value of helping to advance MS research through sharing our personal experiences. They are active members of iConquerMS™, along with 3,000 other people affected by this disease, and have contributed their thoughts to shape the REAL MS™ study.
REAL MS™ participants will be issued surveys every six months to help build a large picture of what MS really looks like. Is doing surveys on the computer from your own home every six months a hardship? I can’t imagine anyone is saying that is too much to ask to find ways to improve our lives with MS or even to possibly find the cure.
It’s simple to do your part to help:
- Go to www.iconquerms.org/join
- Complete the consent form
- Share your contact information
- Complete the baseline surveys
- Receive notices via email of additional surveys and studies
- Share your research ideas
- Give feedback on research proposals
Yes, it really is this simple and easy, and is something everyone can do. We can’t put this off and wait for others to build the research knowledge to find the cure for multiple sclerosis. We all benefit from yesterday’s research volunteers and now it is our turn. Please join REAL MS™ today and help cure MS.
Wishing you well,
How many specialists did you see before finding "The One"?