Updated: On March 14, 2025, the Senate passed a bill that will fund the government through Sept. 30, 2025. We will continue to provide updates as we learn more about how these budget cuts will affect ALS research. This is …
Never back down, never give up: Ken Trent
For Ken Trent and his family, those six words—never back down, never give up—have become their motto. His youngest daughter first said them, and now they guide the Trent family through each day. “ALS takes away your independence,” says Ken. …
LETTER: Neuromuscular Advocacy Groups Oppose NIH Indirect Cost Cap of 15%
On behalf of the approximately 300,000 Americans living with a neuromuscular disease (NMD), the undersigned 40 patient advocacy organizations strongly urge the National Institutes of Health (NIH) to immediately reverse and retract “Supplemental Guidance to the 2024 NIH Grants Policy …
2024 Impact Report
Your support of the Les Turner ALS Foundation has made an incredible difference in the lives of people with ALS, their families, their caregivers, and everyone who has lost someone to this disease. Every time you made a donation, held …
URGENT: Tell Congress to Oppose Catastrophic Research Cuts
The National Institutes of Health (NIH) recently announced a major reduction in grant funding that would have a catastrophic impact on research, especially for neuromuscular diseases like ALS. NIH funding has led to amazing discoveries, including the underlying mechanisms of …
Advocacy in Washington DC
This week, we joined over 50 advocates in Washington, DC at the “More Than Our Stories” conference to discuss priorities for 2025, focusing on research investment, quality of care, and support for those living with ALS and their caregivers. Our …
Medicare Advantage plans directed to cover treatment for SOD1-ALS
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 …
When lives are on the line
Bryan Szymczak has always run toward danger. For 26 years, he fought fires in cities across Illinois, until an ALS diagnosis forced him into early retirement. It began with a weakness in his right thumb, which he chalked up to …
2024 Gift Guide for People Living With ALS and Caregivers
Haga clic aquí para leer este artículo en español. Discover thoughtful and practical gift ideas in our Gift Guide for People Living with ALS, developed with the help of …
Faces of ALS: A Veteran Nurse’s Journey of Service and Strength
Connie Daniels has dedicated much of her life to caring for others. Born at St. Luke’s Hospital in 1946, she grew up on the South Side of Chicago. The oldest girl in a family of six, Connie always wanted to …
