September 2025 Foundation eNews - Les Turner ALS Foundation

Leo’s Motor Neurons, Motoring at the Walk

This September marks Sue Carrel’s 10th ALS Walk for Life—nine of them as the proud captain of Leo’s Motor Neurons, the team she formed with her husband Leo, who lived with ALS until 2018.

“Our son brought us to the ALS Symposium in 2014, and that’s how we found the Les Turner ALS Foundation,” she recalls. “We didn’t even know what the word ‘advocate’ meant at the time—but we found out fast.”

Leo, a high school math teacher and lifelong cyclist, once said: “My motor neurons don’t work, but our family’s do.”

That spirit lives on. Today, Sue walks and dances her way through the event—with friends, pickleball partners, and new teammates who never even met Leo, but come to honor him just the same.

Join Sue and Leo’s Motor Neurons on Saturday, Sept. 20, at Soldier Field in Chicago. Sign up here.

The fight against ALS depends on every voice. In our next ALS Learning Series webinar, we’ll explore how the National ALS Registry collects vital data from people living with ALS to help uncover causes, track patterns, and accelerate research.

Reshma Punjani, MPH, a health scientist with the CDC/ATSDR, will explain how individuals can enroll in the registry, what data is collected, and how it’s used to inform scientific studies. She will be joined by Janie Gobeli, ALS advocate and educator, who will share her personal experience participating in the registry and the impact it has had on her ALS journey.

A live Q&A will follow the discussion.

This program is available at no cost to the ALS community, thanks to support from the Gilbert & Jacqueline Fern Foundation and Mitsubishi Tanabe Pharma America.

Register here.

Save the Date: Les Turner Symposium on ALS

Now in its 15th year, the Les Turner Symposium on ALS brings together leading researchers, clinicians, and advocates to share the latest advances in ALS research and care.

This year’s keynote speaker is Don Cleveland, PhD, renowned neuroscientist and developer of “designer DNA drugs” targeting neurodegenerative disease. His groundbreaking work has shaped the future of ALS treatment and understanding.

Join us Monday, November 3rd for a day of science, community, and impact—featuring presentations, panel discussions, and opportunities to engage directly with experts in the field.

This month, we’re proud to highlight Mary McGovern, who volunteers in memory of her dear friend, Tina Natali, who passed away from ALS in 2017.

“My favorite activity to volunteer for is the ALS Walk for Life at Soldier Field,” Mary shares. “Over the years, I’ve met so many people and shared meaningful stories at various events.”

Mary’s dedication and warmth help make the Walk a welcoming and inspiring experience for all who attend. Her impact is a reminder that volunteers are essential to the success of our mission.

Want to make a difference like Mary? Join us as a Walk Day volunteer or at another event and be part of something powerful. Learn more at this link.

Guide Spotlight: ALS, Relationships, Sex & Intimacy

ALS affects more than physical movement—it changes how we relate to one another. Our ALS & Relationships: Sex and Intimacy guide offers practical, compassionate advice for navigating changes in emotional connection, physical intimacy, and relationship roles.

The guide explores shifting dynamics between partners and caregivers, including common concerns about safety, comfort, and communication. It includes actionable tips for staying connected, creating a fulfilling future together, and addressing changes in behavior or thinking that may arise with ALS.

Intimacy may evolve, but it doesn’t have to disappear. Your ALS care team can help you maintain meaningful connection and open dialogue.

Read the guide and learn how to preserve closeness while adapting to change, available in both English and Spanish.

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.

Robert Friskey

John Giard

Aruna Gupta

Susan “Susie” Shaddle

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.