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Patient Groups Applaud Spending Bill That Funds Important Neuro Data System

September 28, 2018

(Washington, DC) - The National Multiple Sclerosis Society and The Michael J Fox Foundation for Parkinson’s Research (MJFF) applaud Congress and the Administration for funding a new system that will gather data on neurological diseases and provide important information to researchers searching for cures.
Today, President Donald Trump signed into law the Labor, Health and Human Services, Education (LHHS) and Defense “minibus” spending bill. This measure provides funding to the Centers for Disease Control and Prevention (CDC) for the National Neurological Conditions Surveillance System, which was authorized by the 21st Century Cures Act in 2016. The authorization and funding of the System have been long-standing policy priorities for both the Society and MJFF, organizations committed to improving health outcomes for people with neurological conditions.

“Funding for the Surveillance System is a culmination of over a decade of work by the Society, our partners at The Michael J Fox Foundation, and the neurologic community,” said Bari Talente, executive vice president for advocacy at the National MS Society.  “This new National Neurological Conditions Surveillance System will provide important demographic data on neurologic conditions like MS and give us a better understanding of their impact on Americans.”
More than 100 million Americans live with neurologic conditions, almost one-third of the U.S. population, yet many national statistics for these conditions are outdated, as no national collection system existed to gather this information. The demographic data collected by this new system holds the potential to significantly accelerate research by allowing more informed analysis of genetic and environmental disease risk factors. The National Neurological Conditions Surveillance System will also provide a foundation for evaluating and understanding aspects of these conditions such as the geography and demographics of diagnoses, variances in gender, disease burden, and changes in health care practices and utilization among patients.
“Establishing a national data collection system is a game changer for researchers working on scientific breakthroughs, and for families impacted by a neurological condition,” Ted Thompson, JD, senior vice president, public policy at MJFF said. “Our hope is that the critical insights gathered from this demographic information can illuminate new pathways toward cures for the millions who live with conditions like multiple sclerosis and Parkinson’s disease.”
The National MS Society and MJFF want to thank Representatives Michael Burgess (R-26th TX), Tom Cole (R-4th OK), Ryan Costello (R-6th PA), John Larsen (D-CT), David Price (D-4th NC) and Senators Johnny Isakson (R-GA), Chris Murphy (D-CT), and Chris Van Hollen (D-MD) for their longstanding commitment to establishing the National Neurological Conditions Surveillance System. We look forward to continued collaboration to improve the lives of Americans living with neurological conditions.

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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