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MS Activists and Researchers Rally for Medical Research and Neurological Data on Capitol Hill

September 18, 2015

The MS movement was a key part of two major events this week: a U.S. Senate briefing “Advancing Research for Neurological Diseases: The Power of Population Data” and the annual Rally for Medical Research.
 
The Society collaboratively hosted the Senate “Advancing Research for Neurological Diseases: The Power of Population Data” September 16th briefing with 11 other patient, research and provider organizations including the Parkinson’s Action Network, Tourette Association of America, the American Academy of Neurology and Research!America. There was standing-room-only crowd, with nearly half of Senate offices in attendance, as well as Committee staff, a few Representatives offices and more than 20 organizations. 
 
The briefing discussed the Advancing Research for Neurological Diseases Act (S. 849/H.R. 292) which would establish a system to collect the size and makeup of various neurological disease populations. The bill’s lead sponsors, Senator Johnny Isakson (GA) and Senator Chris Murphy (CT) , kicked off the briefing along with MS activist and neurologist from the U.S. Department of Veterans Affairs, Mitch Wallin, MD and Mary Lou Cumberpatch of Maryland, who lives with Parkinson’s disease. Senator Isakson, who also lives with Parkinson’s disease, encouraged all in attendance to cosponsor the bill. Senator Murphy added, “This is a really wise investment… the last comprehensive nation survey for MS was completed in the 1970’s. Think of all the good that can come from aggregating that data.” The bills have achieved broad bipartisan support (13 Senate cosponsors, 109 House cosponsors); the House-side piece passed as part of the 21st Century Cures Act in mid-July, and the Senate piece is positioned for inclusion in the moving Innovations Initiative.
 
“We are encouraged by the potential this bill has to accelerate research for multiple sclerosis,” Cynthia Zagieboylo, President and CEO of the National Multiple Sclerosis Society, said. “Without basic data concerning the size and makeup of the MS population, our researchers are working at a distinct disadvantage because they have an incomplete picture of the disease. The additional information that this new data system would supply could point to new environmental triggers for the disease, which could lead to new treatment targets and a better understanding of the disease.” Urge your Senators to support this bill today.
 
The very next day, MS activists from Maryland, Virginia and the District of Columbia joined MS researchers Jennifer Orthmann Murphy, MD, PhD (Johns Hopkins) and J. Lori Blanchfield, PhD (Emory) as part of the Rally for Medical Research—another collaborative effort organized by the American Association for Cancer Research (AACR) with more than 120 organizations including the Society participating. Over 220 in-person meetings were held with members of Congress and their staff to urge increased funding for the National Institutes of Health (NIH), the largest source of funding for medical research in the world, and the driving force behind the improved health of hundreds of thousands of people living with MS in America. MS activists around the country amplified the voice of the MS movement through social media and emails sent directly to elected officials. 
 
MS activists hope these meetings and requests are heard loud and clear for a robust, predictable and sustained investment in medical research as Congress completes its work on the Fiscal Year 2016 budget.
 
Senator Johnny Isakson of Georgia addressing the briefing

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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