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: The Neuromuscular Disease Community Supports Swift Enactment of the FAA Reauthorization Act of 2024
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 …
Relyvrio/AMX0035 Phase 3 Clinical Trial Results Announced
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 …
ALS organizations come together to advocate for FY25 funding priorities to Congress
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 …
Letter to the Editor: Support veterans with ALS
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 …
ALS Better Care Act introduced in Congress
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 …
FDA Approves tofersen (Qalsody™) for Treatment of SOD1-ALS
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 …
FDA Advisory Committee Recommends Accelerated Approval of tofersen
Watch our oral testimony at the FDA Advisory Committee meeting on March 22, 2023. We are grateful to the FDA Advisory Committee for reviewing the evidence, listening to the ALS community and voting to recommend accelerated approval of tofersen for …
Oral Testimony to the FDA Advisory Committee on the Approval of tofersen
Delivered by Lauren Webb, LCSW, Chief Advocacy and Outreach Officer of the Les Turner ALS Foundation. See also remarks by Senda Ajroud-Driss, MD, Director of the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine. Open …
Call for Comments: Proposed Decision on Medicare & Seat Elevation Systems
UPDATE: As of May 16, 2023, Medicare will formally cover wheelchair seat elevating systems for many types of power wheelchairs. We applaud this decision and are proud to have advocated for it. These systems are vital for those living with a disability. …
