Every moment is an opportunity. It’s estimated that every 90 minutes, someone is diagnosed with ALS. But how many more minutes will pass before that person has the chance to receive care at a multidisciplinary ALS clinic that can extend …
Congress Approves Increase in Federal ALS Research Funding for FY 2026
On Feb. 3, 2026, the U.S. Congress approved new federal funding for ALS research for Fiscal Year 2026, totaling $315 million, the highest level of funding ever for ALS research. We are deeply grateful to the ALS community, including people living with ALS, …
LETTER: Advocating for the Renewal of ALLFTD Study to Propel ALS and FTD Research
The Honorable Richard Hodes, MD, Director of the National Institute on Aging The Honorable Walter Koroshetz, MD, Director of the National Institute of Neurological Disorders and StrokeNational Institutes of Health 9000 Rockville Pike, Bethesda, Maryland 20892 Subject: ALLFTD Renewal Dear Dr. …
Statement: “The One Big Beautiful Bill” Puts ALS Families at Risk
On July 4, 2025, “The One Big Beautiful Bill” was signed into law. It includes deep cuts to healthcare programs that people living with ALS and their caregivers rely on: Medicaid, Medicare, and the Affordable Care Act (ACA). These cuts, …
Letter to Congress: Preserve Funding for the National ALS Registry and Biorepository
The Honorable Members of the ALS Caucus United States Congress Washington, D.C. 20515 Subject: Urgent Action Needed to Preserve Funding for the National ALS Registry and Biorepository Dear Members of the ALS Caucus, We, the collective voice of the ALS …
$40M for ALS in FY25: A Hard-Earned Victory
We are grateful to share that ALS has been recommended by House and Senate Defense Appropriations leadership for $40 Million for Fiscal Year 2025 through the Congressionally Directed Medical Research Programs at the Department of Defense. U.S. military veterans are …
ALS organizations advocate for FY26 funding priorities to Congress
Delivered to the offices of Sen. Susan Collins and Sen. Patty Murray on the U.S. Senate Committee on Appropriations, and the offices of Rep. Tom Cole and Rep. Rosa DeLauro on the U.S. House Committee on Appropriations. March 18, 2025 …
UPDATED: Statement on Proposed Cut to Congressionally Directed Medical Research Program for FY2025
Updated: On March 14, 2025, the Senate passed a bill that will fund the government through Sept. 30, 2025. We will continue to provide updates as we learn more about how these budget cuts will affect ALS research. This is …
LETTER: Neuromuscular Advocacy Groups Oppose NIH Indirect Cost Cap of 15%
On behalf of the approximately 300,000 Americans living with a neuromuscular disease (NMD), the undersigned 40 patient advocacy organizations strongly urge the National Institutes of Health (NIH) to immediately reverse and retract “Supplemental Guidance to the 2024 NIH Grants Policy …
URGENT: Tell Congress to Oppose Catastrophic Research Cuts
The National Institutes of Health (NIH) recently announced a major reduction in grant funding that would have a catastrophic impact on research, especially for neuromuscular diseases like ALS. NIH funding has led to amazing discoveries, including the underlying mechanisms of …
