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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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
