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 evening dedicated to honoring the ALS community. In May, join us for the Lew Blond Memorial 5K Walk/Run, bringing together families, friends, and supporters to make strides for ALS care and research, and look forward to special events to commemorate ALS Awareness Month.
This summer, we’ll celebrate Lou Gehrig Day with baseball games at Guaranteed Rate Field and Wrigley Field in June, while September brings the beloved Les Turner ALS Walk for Life back to Soldier Field.
Looking to the fall, October features the Bank of America Chicago Marathon with Team Race for ALS and the always exciting All in for ALS Casino Night.
Stay tuned for details—together, we’re making a difference!
Advocacy Update
Here’s the latest on key advocacy efforts impacting the ALS community:
- Elizabeth Dole 21st Century Veterans Healthcare and Benefits Improvement Act: On Thursday, January 2, 2025, President Biden signed new legislation that will significantly improve access to in-home care for veterans living with ALS. This legislation will significantly improve access to in-home care for veterans living with ALS. Under the new law, the Department of Veterans Affairs (VA) will cover up to 100% of home care costs—matching or exceeding nursing home costs—ensuring that veterans with ALS can receive care at home. U.S. military veterans are twice as likely to develop ALS compared to non-veterans for reasons that remain unknown.
- Landmark Department of Transportation (DOT) Rule: This groundbreaking rule enhances travel accessibility for individuals with mobility challenges. Improvements include faster assistance for passengers using wheelchairs, better training for airline staff, availability of onboard wheelchairs, greater transparency about cargo hold sizes, and mandated repair and replacement options for damaged mobility devices.
- CMS Directive on Qalsody®: The Centers for Medicare & Medicaid Services (CMS) now requires Medicare Advantage plans to cover Qalsody®, a treatment for genetic SOD1-ALS. This landmark decision ensures timely access to promising therapies for those living with ALS.
“When you take action, progress happens,” said Chief Outreach and Advocacy Officer, Lauren Webb. “A big thank you to all the advocates who’ve pushed for important changes in home care, air travel, and access to therapy. We’ll keep pushing for the policies that make a real difference for those affected by ALS, bringing hope and better support where it’s needed most.”
We’re committed to advocating for policies that bring transformative care and treatment to ALS families. Learn how you can support our advocacy efforts.
Join us on January 20 for the first ALS Learning Series of the year, featuring Reshma Punjani, MPH, and Janie Gobeli. Together, they’ll explore how the National ALS Registry advances research and provides valuable insights into the causes and progression of ALS.
You’ll learn:
- How to join the National ALS Registry and why it matters.
- Insights into data collection, ongoing research, and its impact.
- Janie’s personal experience with the registry as an ALS advocate.
- A Q&A session will follow, giving you the chance to ask your questions directly.
This webinar is presented at no cost thanks to the Gilbert & Jacqueline Fern Foundation, Biogen, and Mitsubishi Tanabe Pharma America.
Register now to secure your spot and learn how you can contribute to the fight against ALS.
The holidays are a time of joy, but they can also bring added stress and responsibilities for caregivers. The Dan Nelson Respite Grant Program offers caregivers of people living with ALS the chance to step away from their care duties, promoting well-being and preventing burnout.
This grant provides short-term respite care and includes a visit from one of our ALS Support Services coordinators to ensure personalized support.
Established in 2012 by Sheila McCullough in memory of her husband Dan and his first caregiver, Thea, this program has grown thanks to the generosity of our donors.
If you’re ready for a well-deserved break, learn more about how to apply today.
Guide spotlight: Participation in Clinical Research
Clinical research is essential for understanding ALS and developing new treatments, and those living with ALS are key partners in this effort. The ALS and Participation in Clinical Research Guide provides the knowledge you need to explore opportunities to contribute.
The guide explains clinical trials, observational studies, and expanded access programs, offering insights into how they advance research and improve understanding of ALS. It also highlights the potential benefits of participating, such as gaining access to new treatments and helping shape the future of ALS care.
With clear guidance on what to expect, how to find a study, and steps to decide if participation is right for you, this guide empowers you to take an active role in research.
Click the link below to read the guide, also available in Spanish:
