September 2026 Foundation eNews - Les Turner ALS Foundation

Team Arrivederci ALS isn’t waving the white flag.

Mike Leopold’s dad was diagnosed with ALS in early 2024, shortly after hand surgery revealed a discrepancy in tests. “I believe we can choose to let this destroy us or unite us,” Mike says. “We’re fighting for our dad, the toughest guy I’ve met.”

Their team, Arrivederci ALS, has grown into a robust crew of family, childhood friends, and loved ones. This October marks their second ALS Walk for Life—their third walk total. Mike recalls last year’s finish at Soldier Field: the team photo, the celebration, the spark it gave his dad. He also remembers Pope Leo’s blessing, a moment that lifted a weight and brought comfort to his devout father. Knowing you’re not alone, and seeing how the community’s love made his dad feel, meant everything.

For Mike, the fight is about awareness. “We’re not going to wave the white flag.”

Join us at the ALS Walk for Life on October 24 at Soldier Field. Register your team or join as an individual today.

Try your luck at All in for ALS Casino Night

Join us for All in for ALS Casino Night on Saturday, Nov. 14, at the East Bank Club in Chicago. Our own Young ProfessionALS Group are hosting this 20th annual event!

Enjoy live blackjack, roulette, and craps with friends. Try your luck at the tables, bid on exciting auction items, enjoy tasty appetizers, and snap pictures in our photo opportunity. Connect with your friends while supporting the Les Turner ALS Foundation, Chicagoland’s leader in comprehensive ALS care.

Come together, have fun, and help fund vital ALS care and research. 100% of proceeds benefit the Foundation.

Get your tickets now and we’ll see you at the tables.

Positive Phase 3 results for FUS-ALS treatment

Otsuka and Ionis have announced that ulefnersen, an investigational treatment for FUS-ALS, met its primary endpoint in the Phase 3 FUSION trial — the first FUS-ALS trial ever to do so. The study showed statistically significant improvements in functional impairment and survival, with a favorable safety profile.

FUS-ALS is a rare, fast-progressing form of ALS. In 2009, the FUS gene was discovered through research directed by Dr. Teepu Siddique at the Les Turner ALS Center at Northwestern Medicine, supported by the Foundation. This milestone shows how ALS research can lead to real treatment options.

Ulefnersen is not yet approved. Otsuka is establishing an early access program.

Read the full article to learn more about this breakthrough.

Guide Spotlight: ALS & Caregiver Self-care

Caregivers can live fulfilling lives with the right support. Making sure you meet your own physical and emotional needs will help both you and your loved one with ALS.

Our ALS & Caregiver Self-Care Guide offers practical strategies for protecting your well-being, from daily self-care habits to building a support system. Inside, you’ll find information on the stages, causes, and symptoms of caregiver burnout — plus ways to prevent and address it. You’ll also learn how to ask for help effectively, explore professional and community support, and discover resources including support groups, caregiver apps, and Veterans Affairs assistance.

Whether you’re new to caregiving or years into the journey, this guide is here to help you care for yourself while caring for someone you love.

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

Volunteer at the ALS Walk for Life!

Volunteers make the ALS Walk for Life possible, and we need your help to create another unforgettable day. Join us Saturday, October 24 at Soldier Field and play a vital role in welcoming participants, families, and supporters as we come together to honor everyone affected by ALS.

From event setup and registration to route support and day-of activities, your time and energy make a real difference. No experience is needed — just a willingness to show up and lend a hand.

Ready to get involved? Sign up today by clicking the link.

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.

Zac Braun
Eileen Lerma
Kathleen “Kathy” Olson

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.