September 2025 Foundation eNews - Les Turner ALS Foundation

Join us and the ALS community this Saturday!

The ALS Walk for Life is this Saturday, Sept. 20 at Soldier Field in Chicago, and we couldn’t be more excited! This isn’t just a fundraiser — it’s the Midwest’s largest ALS celebration, where families, friends, and supporters come together to walk two miles along the dazzling Chicago lakefront and stroll through historic Soldier Field.

Expect food trucks, lively kids’ activities, photo ops, and vibrant community energy, all in honor of people living with ALS and the ones we’ve lost. In addition, we’ll also be getting a special video message from Pope Leo to our community kicking off the day’s events.

Your support helps fund direct patient care, research, equipment loans, and critical programs that bring hope and solutions.

It’s a day of joy with a purpose — let’s celebrate together. Still haven’t registered? It’s not too late. Click the link to sign up now.

We’re standing behind critical research

Amid a federal funding freeze that threatens to stall life-saving ALS research, the Les Turner ALS Foundation is stepping up with a $500,000 emergency gift to Northwestern University Feinberg School of Medicine.

This gift supports four research labs at the Les Turner ALS Center at Northwestern Medicine — sustaining momentum behind promising new therapies like NU-9, and pushing forward urgent genetic and cellular ALS research.

“We can’t stand by while progress slips away,” said CEO Laura Freveletti. “People living with ALS don’t have time to wait.”

This commitment was made possible by donors like you. Read the full story here, and please consider making a gift to help us continue funding breakthroughs in ALS care and research. Together, we are the lifeline. Read the full article here.

Legislative wins in Illinois

In August, three state bills we supported were signed into law—an important step for people living with ALS and their families.

HB 3849: Improves care delivery at end of life and eases caregiver stress.
HB 1712: Standardizes training for nursing home professionals to honor residents’ goals.
HB 2877: Fills gaps so people with serious diagnoses can spend more time at home.

“These new laws will make life easier for families—helping people with ALS on hospice get prescriptions more smoothly, making sure their care wishes are respected and improving training and standards for care,” said Lauren Webb, Chief Advocacy and Outreach Officer for the Les Turner ALS Foundation. “A big thank you to our legislative champions and the Illinois Hospice & Palliative Care Organization for making this progress possible.”

With these bills, Illinois takes a meaningful step toward a more compassionate, coordinated system—one where people with ALS and their families receive the right care at the right time, and with dignity.

This month, we’re celebrating Debi Naumann, who—along with her friend Mary—has volunteered at the ALS Walk for Life every year since 2018.

Their commitment honors their best friend, an avid outdoorswoman who died from ALS in 2017, just weeks after their first Walk. “We were so grateful for the support she received from the Les Turner ALS Foundation that the best way to give back was to volunteer each year in her memory—and to support others affected by this disease,” Debi shares.

“The Foundation makes volunteering easy and the event is so well organized. We drive in from the northwest suburbs and are always greeted warmly.”

Inspired by Debi’s story? Join us this Saturday and make a difference.

Help Advance Fundamental Rights for the ALS Community — Global Survey Now Open

The Les Turner ALS Foundation is supporting the International Alliance’s third global Fundamental Rights Survey. It’s open to people living with ALS (PALS), current or former care partners (CALS), and—new this year—blood relatives.

Insights from the 2021 and 2023 surveys has shaped advocacy and programs worldwide. This year’s goal is 3,000 responses with broader participation from underrepresented regions.

The survey is available in 15 languages, and countries with statistically significant responses will receive a country-specific report to strengthen local advocacy and strategy.

Please add your voice and share the survey widely with your networks.

Survey deadline: October 31, 2025

Take the survey here.

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.

Abraham Joseph

Jon Hub

John “Jack” Smith

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.