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 …
National Institute on Aging invests an additional $7.3 million into NU-9
With its ability to improve neuron health, experimental drug NU-9 has already shown promise in reversing amyotrophic lateral sclerosis (ALS). Now, the National Institute on Aging (NIA) has provided approximately $7.3 million to fund exploration into the Northwestern University-invented drug’s …
Walker Wednesday #7
Know Before You Go Can you believe the ALS Walk for Life is only three days away? We are so excited to see everyone again at Soldier Field so soon. From everyone at the Foundation, thank you so much for …
Walker Wednesday #6
Crunch Time Fundraising On-The-Go With only ten days left till the Les Turner ALS Walk for Life, the countdown starts now for a final push for fundraising. Luckily, there are many ways to quickly spread the word and take your …
Walker Wednesday #5
Celebrate Your Success With Fundraising Prizes Encourage your team to level up their fundraising to earn more exciting fundraising prizes. Fundraising incentive prizes are cumulative, so those who raise over $1,000 will receive all four prizes. Email us if you have …
