Below you'll find a list of all posts that have been categorized as “Advocacy”
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 …
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 …
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 …
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. …
RE: FDA-2022-N-0691 Dear FDA Advisory Committee: We write to express our strong support for the approval of tofersen under the FDA’s Accelerated Approval Program. Our organization’s long history of scientific research into SOD1-ALS and our depth of experience supporting people …
