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 …
Comments to Centers for Medicare & Medicaid Services on Seat Elevation Systems as an Accessory to Power Wheelchairs
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. …
Donor Spotlight: Robert P. Ives
Robert “Bob” P. Ives is a familiar face at the Foundation. He has presented at our ALS Learning Series webinars, provided feedback on the My ALS Decision Tool™, and participates in our support groups. Bob and his wife Mary are …
We’re in it Together at the ALS Walk for Life!
The ALS Walk for Life, which will take place on Saturday, September 24 at Soldier Field, brings together thousands of walkers to create ALS awareness and raise much-needed funds for ALS care and research. But it also creates something else …
August 2022 Foundation eNews
Foundation News We’re in it Together at the ALS Walk for Life! The ALS Walk for Life, which will take place on Saturday, September 24 at Soldier Field, brings together thousands of walkers to create ALS awareness and raise …
Comments from ALS Organizations United in Support of AMX0035 Approval
Submitted for FDA Advisory Committee hearing on September 7, 2022 Amyotrophic lateral sclerosis (ALS) is a horrific, neurodegenerative disease. At terrifying speed, ALS robs people of the ability to move, speak, eat, and breathe. It kills so quickly that people …
Faces of ALS: Tackling Those Miles for Mitch
Marathon runners choose to run for a variety of reasons. Some love to run, enjoy the challenge, or want to cross off an item on their bucket list. Others are running for something – or someone – beyond themselves. Nathan …
Submit Comments to FDA Advisory Committee on AMX0035 by August 23
The U.S. Food and Drug Administration (FDA) will hold a second public advisory committee meeting on September 7, 2022 to discuss new data about the safety and efficacy of AMX0035, a new treatment for ALS from Amylyx Pharmaceuticals. Following this …
August 2022 Foundation eNews
Foundation News Show Your Support at the ALS Walk for Life on September 24! The ALS Walk for Life brings together thousands of people…and among them are thousands of incredible stories. Lori couldn’t wait to return to the Walk …