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 …
February 2025 Foundation eNews
Celebrating a force for change At the Hope Through Caring Gala, we’re proud to honor Jean Swidler and Mindy Uhrlaub, founders of End the Legacy, with the Harvey and Bonny Gaffen Advancements in ALS Award. Jean and Mindy’s mission is deeply …
January 2025 Foundation eNews
Save the date: Hope Through Caring Gala Mark your calendars for the 37th annual Hope Through Caring Gala on Saturday, April 5 at the stunning Radisson Blu Aqua Hotel in Chicago. This unforgettable evening brings together ALS researchers, care teams, business …
January 2025 Foundation eNews
Looking ahead: Big events in 2025 The new year is here, and we’re thrilled to share a preview of what’s ahead at the Les Turner ALS Foundation. Mark your calendar for our Hope Through Caring Gala on Saturday, April 5, an inspiring …
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 …
December 2024 Foundation eNews
Empowering choices: Watch our new video on clinical research Deciding whether to join a clinical research study is a personal and significant choice for people living with ALS. To help empower these decisions, we’ve created a new video featuring Emma Schmidt …
Introducing the New Participating in Clinical Research Tool
Deciding whether to participate in clinical research is a pivotal step for people living with ALS and their families. It’s a process often filled with important questions about risks, benefits, and expectations. Clear and reliable information is essential to empower …
November 2024 Foundation eNews
November is National Family Caregivers Month This month, take a moment to honor the dedication and resilience of caregivers who provide vital support for their loved ones living with ALS. At the Les Turner ALS Foundation, we recognize the unique …
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 …