October 2026 Foundation eNews

On Sept. 28, Congress passed the ACT for ALS Reauthorization Act, extending critical research and expanded access programs through 2031. The bill now heads to the President’s desk to be signed into law.

Since its enactment in 2021, ACT for ALS has strengthened research infrastructure, improved coordination across federal agencies, and expanded access to promising therapies — building a national research ecosystem through the ALS Knowledge Portal, the ALL ALS Consortium, and the FDA’s Rare Neurodegenerative Disease Grants Program. With this reauthorization, the last five years of progress can continue.

We’re deeply grateful to the advocates, ALS organizations, researchers, clinicians, and bipartisan congressional champions who made this possible — especially Rep. Mike Quigley, Rep. Ken Calvert, Sen. Lisa Murkowski, and Sen. Chris Coons.

Today, we celebrate. Tomorrow, we keep building.

Become an Advocate Today

ICYMI: Every mile for Vanessa

Kenny Muñoz doesn’t dwell on the hardest months. When he thinks of his sister Vanessa, he thinks of her dancing, laughing, and holding court at a rooftop party.

Vanessa was diagnosed with ALS in February 2023. By August, she was gone. Kenny, his brother Ruben, their parents, and sister-in-law Roberta became her caregivers — trading shifts, cooking meals, and making sure she made it to her daughter’s quinceañera.

This October marks the fourth year Vanny’s Village walks in her honor. Kenny is also running his first Chicago Marathon with Team Race for ALS.

“Just showing up and wanting to spend time is the most critical piece,” he says.

Read the full story at the link.

Guide Spotlight: ALS + Relationships, Sex and Intimacy

An ALS diagnosis changes more than health — it can shift the dynamics of your closest relationships. Learning to navigate those changes with honesty, patience, and open communication will help both you and your loved one with ALS.

Our ALS & Relationships, Sex and Intimacy Guide offers practical guidance for adapting to your new roles, whether you’re a caregiver, a partner, or someone living with ALS. Inside, you’ll find tips on handling changing relationship dynamics, communicating your needs, creating a fulfilling future together, and maintaining physical intimacy. You’ll also learn how ALS can affect thinking and behavior, and how your ALS care team can help.

However your relationship evolves, this guide is here to support you today and tomorrow.

Read the guide at this link, available in both English and Spanish.

In Our Thoughts

We offer our sincere condolences to all those who have lost a loved one to ALS. Today, and every day, we honor and remember them.

Peter Burchard

We invite you to share a tribute—whether a story, memory, or photo— to our Celebration of Life memorial wall, keeping the legacy of your loved one alive and reminding others they are never forgotten.

Support ALS Care and Research

The Les Turner ALS Foundation exists to care for those affected by the disease, answer their questions, support them and their loved ones, and provide hope through scientific research at the Les Turner ALS Center at Northwestern Medicine.

Please make a gift so we can continue to deliver that care and support. Together, we will create a world free of ALS.