June 2026 Foundation eNews - Les Turner ALS Foundation

Unite with us along the lakefront for a world free from ALS

Join us at Soldier Field on Saturday, Oct. 24, for the ALS Walk for Life — the largest ALS walk in the Midwest. Registration is officially open, and we invite you to be part of this unforgettable day.

For many in our community, it’s the most anticipated event of the year: a powerful, high-energy celebration filled with hope, connection, and purpose. Together, we’ll take a two-mile stroll along Chicago’s beautiful lakefront, honoring those living with ALS and celebrating the enduring legacy of loved ones no longer with us.

Every step and every dollar directly supports comprehensive care, trusted resources, and vital scientific research. Whether you’re rallying a massive team or walking with a small, close-knit group, this is our collective moment to unite.

Rally your team, secure your spot, and start fundraising today for Oct. 24!

Join us Thursday, June 25, at 12 p.m. CT for our next ALS Learning Series webinar: The ALS Turbocharged Living Scale: A New Way to Measure What Matters.

This inspiring one-hour conversation will feature Peggy Plews-Ogan, MD, of the Hummingbird Fund, sharing the story behind the ALS Turbocharged Living Scale — a powerful framework developed by her late husband, Jim, that offers a meaningful way for people living with ALS to measure and celebrate quality of life beyond physical function.

Whether you are navigating ALS yourself or supporting someone who is, this webinar will provide a fresh perspective and practical insight. Following the presentation, we invite you to participate in a live Q&A session with Dr. Plews-Ogan.

The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation, Biogen & Shionogi for sponsoring this webinar.

Please register now at the link below.

Shape the Future of Research: Become an ALS Alliance Fellow

Applications are open for two virtual opportunities to influence global ALS research: the Patient Fellows Program and the Alliance Fellows program (formerly Global Research Ambassadors). You can apply for one or both through a single form by Friday, July 3.

Patient Fellows Program: Connects people living with ALS, caregivers, and gene carriers directly to the International Symposium on ALS/MND, providing symposium registration, researcher networking, and limited travel support.

Alliance Fellows: A four-week online learning program (September–October) that combines self-directed content with live interactive sessions to deepen your understanding of research, treatment development, and advocacy. Open to the wider community, it offers a certificate, a social media badge, and entry into the Global ALS/MND Experience Network.

Your lived experience is vital to scientific progress. Apply by Friday, July 3, at the link to make your voice heard.

Guide Spotlight: ALS & Genetics

Understanding your genetic blueprint can open doors to more personalized ALS care, treatment options, and clinical trial opportunities.

The ALS & Genetics Guide emphasizes that all people living with ALS, regardless of family history, should have access to genetic counseling and testing. It demystifies the role of a genetic counselor, walks you through the testing process step by step, and explains what results can tell you—from identifying targeted therapies like Qalsody for SOD1-ALS to understanding implications for your family.

Interactive tools like the My ALS Decision Tool™: Genetic Counseling & Testing, help you weigh the benefits and downsides at your own pace, so you can make an informed choice.

This resource also addresses the emotional journey, cost considerations, and practical tips for sharing results with loved ones. With guidance from your ALS care team and our Support Services team, you’ll never navigate this alone.

Read the ALS & Genetics guide here, available in both English and Spanish.

ICYMI: Researchers discover cause of neuron excitability in ALS, leading to new potential treatment

Researchers at the Les Turner ALS Center at Northwestern Medicine have uncovered why nerve cells overfire in ALS—and they’ve already designed a new drug to stop it.

Led by Dr. Evangelos Kiskinis, the team discovered that the protein TDP-43 disrupts an ion channel that normally acts as a brake on brain cell activity, leading to the hyperexcitability seen in many patients. Using patient-derived stem cells, a technique funded by the Les Turner ALS Foundation, they developed an antisense oligonucleotide therapy that targets this defective mechanism.

This approach could be a game-changer for sporadic ALS, which accounts for the vast majority of cases. Pre-clinical studies are being planned, with the hope of advancing to human trials.

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.

Gary Narcisi
Aaron Ridgely
Elizabeth Ryan
Admir Sarajlic
Dorothy Styx

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.