Below you'll find a list of all posts that have been categorized as “Advocacy”
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 …
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: 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 …
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 …
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 …
This week, we joined over 50 advocates in Washington, DC at the “More Than Our Stories” conference to discuss priorities for 2025, focusing on research investment, quality of care, and support for those living with ALS and their caregivers. Our …
Under a new directive from the Centers for Medicare and Medicaid Services (CMS), Medicare Advantage plans are now required to cover QALSODY® (tofersen), Biogen’s recently-approved treatment for people living with SOD1-ALS. We strongly support this new directive. Study results suggest …
Letter sent to Congress on May 3, 2024 Dear Speaker Johnson, Minority Leader Jeffries, Majority Leader Schumer, and Minority Leader McConnell; In service of the approximately 300,000 Americans living with a neuromuscular disease, for whom we collectively serve, the undersigned …
UPDATE: Amylyx Pharmaceuticals has announced that Relyvrio will be removed from the market, and that patients on the therapy as of April 4 in the U.S. and Canada who, in consultation with their physician, wish to continue can be transitioned …
Delivered to the offices of Sen. Patty Murray and Sen. Susan Collins on the U.S. Senate Committee on Appropriations, and the offices of Rep. Kay Granger and Rep. Rosa DeLauro on the U.S. House Committee on Appropriations. March 5, 2024 …
