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. …
Faces of ALS: Channeling Mom’s Positivity in the Face of Familial ALS
As a healthcare worker, Tina cared for people diagnosed with ALS, including her mother. Prior to her mom’s passing in 2018, Tina started to experience symptoms that were eerily familiar. “Towards the end of my mother’s battle with ALS, I began …
Newly published data on tofersen shows success in treating SOD1-ALS
New results published this week provide further evidence that tofersen, a drug in development by Biogen, may be effective in slowing the progression of SOD1-ALS. As reported in the New England Journal of Medicine, the Phase 3 clinical trial (VALOR) …
September 2022 Foundation eNews: ALS Walk for Life!
Foundation News These people are unstoppable. The ALS Walk for Life brings together thousands of walkers who have dedicated their time to helping people living with ALS. We’re excited to gather with the ALS community and raise much needed …
September 2022 Foundation eNews
Foundation News ALS Walk for Life, Saturday, September 24! If this is your first ALS Walk for Life, you’re not alone. Suzanne will be participating in the Walk for the first time – and walking in memory of her …
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 …
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 …