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. …
Comments to the FDA Advisory Committee in Support of Tofersen Approval
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 …
FDA Approves AMX0035 (RELYVRIO™) for Treatment of ALS
The FDA’s decision to approve Amylyx Pharmaceuticals’ therapeutic compound AMX0035 for treatment of ALS was fully justified by the data and the science. Clinicians, researchers, advocacy groups, and people living with ALS spoke in overwhelming numbers in favor of approval. …
FDA Advisory Committee Recommends Approval of AMX0035
Watch our oral testimony at the FDA Advisory Committee meeting on September 7, 2022. We are grateful to the FDA Advisory Committee for examining the evidence, listening to the ALS community, and voting to recommend approval of Amylyx Pharmaceuticals’ therapeutic …
Oral Testimony to the FDA Advisory Committee on the Approval of AMX0035
Delivered by Andrea Pauls Backman, CEO of the Les Turner ALS Foundation. Slides can be seen here (PDF). Open Public Hearing FDA Advisory Committee on AMX0035 September 7, 2022 Good afternoon. My name is Andrea Pauls Backman, CEO of the …
