Contact:
Brian Frederick
The ALS Association
(202) 464-8612
bfrederick@alsa-national.org

FOR IMMEDIATE RELEASE

The ALS Association, the Muscular Dystrophy Association and the Les Turner ALS Foundation Strongly Oppose Elimination of the National ALS Registry at the Centers for Disease Control and Prevention

Washington, D.C. (May 31, 2017) — President Trump’s Administration’s FY18 budget request to Congress recommends defunding of the National ALS Registry at the Centers for Disease Control and Prevention. The ALS Association, the Muscular Dystrophy Association (MDA) and the Les Turner ALS Foundation are deeply concerned that this budget cut, if enacted, would slow progress in ALS research and in understanding the cause(s) of ALS. Support for the National ALS Registry is a non- partisan issue as the Registry has enjoyed support from both sides of the aisle.

The Administration’s budget proposal, if enacted, would eliminate the opportunity for people living with ALS to directly connect with a wide range of clinical trials and epidemiological studies. The budget proposal would also stop the collection of vital information that is allowing both public and private researchers across the United States to identify disease patterns and risk factors of ALS. In addition, it would end funding for 13 unique extramural researcher-initiated studies that explore the causes of ALS.

As the Administration’s proposed budget is only one step in a complex federal budgeting process, our organizations collectively remain committed to educating Congress and the Administration about the importance of the National ALS Registry and the essential need for federal funding to support the goals of the Registry in the fight against ALS. The Registry has long had bipartisan support in Congress, and we look forward to seeing this support continue as we work together to end ALS.

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