August 2026 Foundation eNews - Les Turner ALS Foundation

Family, faith, and a reason to walk together

For Michael Jaquez and his family, the ALS Walk for Life is about one thing: seeing his mom, Luz, smile. Diagnosed with ALS in early 2025, Luz faced the first months with an outpouring of love from a family so big they need a campground for reunions.

Last year, Team Luzstrong made their Walk debut — a close-knit group of family and friends walking together along the lakefront. For Luz, a woman of deep faith, hearing the Pope’s recorded message at the event was the most meaningful moment. For Michael, it was simply spending the day together, camera in hand, capturing the joy.

His advice for first-time walkers? Start your team early, create a family group chat, share the link widely, and don’t forget to take video — it goes further than photos ever could.

Register now or join a Walk team and make this October 24 at Soldier Field a day to remember.

Join us Thursday, August 20, at 10 a.m. CT for our next ALS Learning Series webinar: ALS-FTD Clinicopathological Overlap.

This one-hour session features Dr. David Irwin, clinical director of the Penn Frontotemporal Degeneration Center and a leading researcher in cognitive neurology and neuropathology at the University of Pennsylvania. Dr. Irwin will explore the shared biological connections between ALS and frontotemporal dementia (FTD), explaining what current research tells us about how these conditions overlap. He’ll help you understand what cognitive and behavioral changes to watch for, how they may appear over the course of the disease, and what this means for care and support planning.

Following the presentation, we invite you to participate in a live Q&A session with Dr. Irwin.

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.

ICYMI: Targeting Key Proteins in the Fight Against ALS

Scientists at the Les Turner ALS Center at Northwestern Medicine have zeroed in on a cellular gatekeeper that may hold promise for treating abnormal protein accumulation in neurodegenerative diseases.

“In all neurodegenerative diseases, there is an accumulation of misfolded proteins,” said Robert Kalb, MD. “We think that these misfolded proteins are a target for disease — the disease is actually driven by the accumulation of these misfolded proteins.”

In the current study, Kalb and his collaborators aimed to investigate the role of RAD23, a protein that is involved in the identification and disposal of damaged or misfolded proteins.

Read the article at the link.

Guide Spotlight: ALS & Home Modifications

Maintaining independence and safety at home is a priority for people living with ALS as their mobility needs change over time. Our guide details how home modifications—ranging from simple accessibility adjustments to more significant structural changes—can help you navigate your environment more easily. By planning ahead, you can ensure your living space remains a source of comfort and security.

This resource is a vital tool for those seeking practical solutions for daily living, including bathroom safety, ramp installations, and doorway widening. We’ll help you prioritize these changes, ensuring you feel confident in your home environment with technical advice and referrals to proven vendors.

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

Help shape the future of ALS research

Your story matters. The National ALS Registry gives everyone living with ALS a direct way to contribute to research that could lead to better treatments and, one day, a cure. By joining the Registry, completing risk factor surveys, and sharing your experience, you help scientists understand who gets ALS, what factors affect the disease, and how many people are living with it across the country.

You can also choose to donate specimens to the National ALS Biorepository or learn about clinical trials and research studies recruiting participants. It’s a simple, meaningful way to be counted and to help future generations. Research today starts with people like you.

Join the National ALS Registry now and help find answers.

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.

Angelica Burns
Mary C. Dempsey
Mike Dohan
Molly Flynn
James Hartman
Stephen Hatch
Mark Josephson
Irvin Kennedy
Lois Kolumbar

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.