September 2026 Foundation eNews - Les Turner ALS Foundation

Walking for Stephanie keeps her light shining

Stephanie Kennedy was, as her daughter Elizabeth describes her, “the brightest light in the room.” When Stephanie was diagnosed with ALS in February 2020, that light never dimmed — it simply found new ways to shine through the people who loved her most.

Her team, Walking for Stephanie, will make their sixth trip to the ALS Walk for Life this fall. “The numbers have dwindled, but the results are mighty,” Elizabeth says. Her father still travels from central Illinois each year to walk alongside her. “It’s always bittersweet when we see her on the March of Faces.”

For Elizabeth, the Walk is both a tribute and a healing ritual. “It feels like the right thing to do. It’s a great way for my father and me to deal with the grief.”

One memory stands out: a friend arriving in a full flamingo costume on a sweltering day, for no reason other than to bring levity. “If my mom was there, she would’ve laughed so hard,” Elizabeth says. “He did bring smiles to people’s faces.”

That’s what the ALS Walk for Life is all about — showing up for one another, honoring those we’ve lost, and finding moments of joy along the way. Join Elizabeth and hundreds of others on Saturday, October 24 at Soldier Field. Register your team or sign up as an individual today.

YPG Trolley Pub Crawl — Come for the Beer, Stay for the Cause

Join the Young ProfessionALS Group for a fun afternoon exploring Chicago’s local breweries! Hop aboard the trolley with fellow YPG members and visit three great spots: Midwest Coast, Revolution Brewing, and Burning Bush Brewery.

Your ticket includes trolley transportation, access to all three stops, and discounted drink specials at participating breweries. This is a great opportunity to connect with other young professionals, support the Les Turner ALS Foundation, and taste some great local beer!

Bring your friends, meet new people, and raise a glass for a great cause. Space is limited, so grab your ticket today!

There’s still time to join us this Thursday, September 24, at 12 p.m. CT for our ALS Learning Series webinar: Cognitive and Language Impairments in ALS & ALS-FTD: Signs & Strategies.

Marie Saxon, MS, CCC-SLP, a senior speech language pathologist at Shirley Ryan AbilityLab, will guide this one-hour session on the cognitive and language changes that can accompany ALS and FTD. You’ll learn how shifts in executive functioning, attention, memory, and social cognition may affect decision-making, safety, and connection — and walk away with practical tools to support independence today.

Bring your questions for the live Q&A following the presentation.

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

Register now at the link below.

Guide Spotlight: ALS & Children/Youth

Talking with children about ALS isn’t easy, but open, honest conversations can make a world of difference. Our ALS + Children/Youth guide, developed in partnership with Dr. Melinda Kavanaugh and Global Neuro YCare, helps you navigate these important discussions with confidence.

This resource offers age-appropriate strategies for talking young people about ALS, from what to say to how to recognize when they’re struggling. It also explores the often-overlooked role of young caregivers, with practical guidance on building their confidence through training, teamwork, and support. You’ll find tools for helping children cope — from support groups and camps to counseling and school collaboration.

With resources for every developmental stage and school professionals, you’ll feel equipped to support the young people in your life through every step of this journey.

Read the ALS & Children/Youth guide here, available in both English and Spanish.

ICYMI: Running for Dad — Kayleigh’s Marathon Mission

When Kayleigh Massengill lines up for the Chicago Marathon on October 11, she’ll be running for her dad, Scott, who passed away from ALS in 2024. Her fundraising team, Team Scott, keeps his legacy alive with every mile.

“It helps me keep his memory alive and other families who are going through this,” she says. “Knowing that I’m running for other folks struggling in the ALS community keeps me moving.”

Throughout training, Kayleigh’s mantra has been simple: “Scott up.” It carried her through her first marathon in New York City and now fuels her second with Team Race for ALS.

Read her full story and support Team Scott today.

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.

Manuel Carmona
Jay Doherty
William Montroy
Harold Pelzer

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.