Below you'll find a list of all posts that have been categorized as “Advocacy”
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 …
This letter was published in the Chicago Tribune on Saturday, Nov. 11, 2023 For many people, baseball is the first thing that comes to mind when they think of amyotrophic lateral sclerosis, or ALS, thanks to New York Yankees player …
UPDATE (12/14/2023): We encourage you to raise your voice in support of the ALS Better Care Act through MDA’s Action Center. UPDATE (11/9/2023): The ALS Better Care Act has now been introduced in the U.S. Senate. We are pleased to …
We are pleased that the FDA has granted accelerated approval to tofersen for treatment of SOD1-ALS. As the first FDA-approved treatment to target a genetic cause of ALS, this is a landmark moment for the ALS community. We are grateful …
