August 2025 Foundation eNews - Les Turner ALS Foundation

No Quitters for Q: walking strong for 16 years

Since 2009, Ninfa Queyquep has led her team, No Quitters for Q, at the ALS Walk for Life in honor of her late husband, Eric. “He was diagnosed in July, and we went to our first Walk that same year,” she says. “I thought it might be a sad day, but it was actually uplifting. We’ve been going ever since.”

Now over a decade later, Ninfa’s team is one of the largest on the lakefront, often nearing 100 members strong. “The Walk is a reminder that patients are not alone—it takes them hours to get ready, but they show up,” she says. “That’s why we keep showing up too.”

Ninfa’s passion fuels progress — and yours can, too. Join her and hundreds more on Saturday, Sept. 20 at Soldier Field for this year’s ALS Walk for Life.

Join us Thursday, August 21 at 12pm CT for a free webinar on how occupational therapy can support daily living with ALS.

Becca Schroeder, MOT, OTR/L, will share strategies to conserve energy, use adaptive equipment, and stay independent at home and in the community. Becca brings experience from the Lois Insolia Clinic at the Les Turner ALS Center at Northwestern Medicine, where she helps people living with ALS find practical, personalized solutions to everyday challenges.

This event is sponsored by the Gilbert & Jacqueline Fern Foundation and Mitsubishi Tanabe Pharma America.

Register today to gain tools and resources that can make life a little easier.

Support when you need it

The Les Turner ALS Foundation is proud to offer meaningful support for families facing the challenges of ALS. Through initiatives like the Dan Nelson Respite Grant Program, we provide short-term respite care so primary caregivers can take a well-deserved break. These grants not only support caregiver well-being but also include a visit from one of our experienced ALS Support Services Coordinators.

We also offer equipment loans—including wheelchairs, ramps, and communication devices—for needs not covered by insurance or while waiting for insurance approval. These tools can be essential to maintaining comfort, mobility and connection.

Together, we’re here to help make each day a little easier.

To learn more about these programs, click the link here.

Renewing a critical study for ALS

The Les Turner ALS Foundation recently joined leading ALS organizations in signing a letter urging the NIH to renew funding for the ALLFTD study—an essential research initiative exploring the shared genetic roots of ALS and Frontotemporal Degeneration (FTD).

ALLFTD focuses on individuals carrying the C9orf72 gene mutation, the most common genetic cause of both diseases. Its renewal is vital to better understanding how ALS and FTD develop, paving the way for more targeted and effective treatments.

As signatories, we advocate for the continued progress of this groundbreaking study and for the many individuals and families living with the uncertainty of a genetic ALS or FTD diagnosis.

Breakthroughs begin with bold research—read the full letter here.

Guide Spotlight: ALS & Children/Youth

ALS affects the whole family—including children. Our guide, Families and ALS: A Guide for Talking with and Supporting Children and Youths, offers age-specific strategies to help you navigate honest, supportive conversations with the young people in your life.

Created in partnership with Dr. Melinda Kavanaugh and Global Neuro YCare, this resource also addresses caregiving roles, emotional well-being, and school support. Plus, it connects families to training programs like YCare and support organizations like Hope Loves Company.

Whether your child is asking questions, helping with care, or struggling to cope, this guide can help you meet them where they are—with empathy, clarity, and confidence.

Read the guide here, 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.

Michelle Justice

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.