July 2025 Foundation eNews - Les Turner ALS Foundation

Two decades of walking strong — Gary Kravitz and his crew

Since 2004, Gary Kravitz has been a constant presence at the ALS Walk for Life. “I’ve signed up 20 years in a row,” he says. “I only missed once—when my mom passed—but I still raised a lot of money that year.” Gary’s team, the Kravitz Krew, walks in her memory and has become a familiar sight at the lakefront and beyond.

For first-timers, Gary offers this advice: “Use every digital tool you can. Customize your emails, post in local Facebook and Nextdoor groups, and make your posts public so they’re shareable. A little effort goes a long way.”

For Gary, the most meaningful part is reconnecting with longtime teams all the way back to 1985. “It’s like a family out there,” he says.

Sign up or join a team today ahead of this year’s walk on Saturday, Sept. 20 at Soldier Field.

New law puts ALS families at risk

On July 4, the “One Big Beautiful Bill” was signed into law, enacting $1 trillion in cuts to Medicaid, Medicare, and the ACA. For people living with ALS and their caregivers—who already face a maze of insurance red tape—this bill will mean longer delays, higher costs, fewer specialists, and fewer options for care at home.

ALS progresses rapidly, and families urgently need timely, coordinated care. Caregivers, many of whom depend on Medicaid themselves, are especially vulnerable. With rural clinics already closing and new barriers to accessing coverage, the consequences of this bill will be felt quickly and deeply.

At the Les Turner ALS Foundation, we’re committed to advocacy and support services to help ALS families navigate what’s ahead.

Read our full statement and find out how to take action or get support today.

Preserving your voice is an urgent priority for people living with ALS—but recording is just the first step. In our next ALS Learning Series webinar, speech-language pathologist Lane Rials, MS, CCC-SLP, will guide us through the full process: from voice and message banking to integrating your preserved voice into communication tools.

We’ll also explore current technologies, including how artificial intelligence (AI) is being used to enhance voice preservation. With 20+ years of experience and a deep focus on Augmentative and Alternative Communication (AAC), Lane brings practical insight and real-world guidance to help individuals and families stay connected.

This live webinar is free for the ALS community, thanks to the Gilbert & Jacqueline Fern Foundation and Mitsubishi Tanabe Pharma America. Join us this Thursday; register now with this link.

Raise a glass and raise awareness this summer

The Young ProfessionALS Group’s Cruisin’ for a Cure event is making its maiden voyage—and it’s your chance to make waves for ALS!

Join us on Saturday, August 9, for an unforgettable evening aboard a tiki boat cruising along Chicago’s stunning lakefront. Enjoy skyline views, an open bar, and a spectacular fireworks show—all while supporting ALS care, research, and support services.

Boarding begins at 8:30 p.m., with the cruise running from 9 to 10:30 p.m. Whether you’re catching up with old friends or meeting new ones, this is one summer night you won’t want to miss.

Space is limited—grab your ticket today!

Guide Spotlight: Genetic Counseling and Testing for Family Members

If ALS or a related condition—like FTD, Parkinson’s, or schizophrenia—runs in your family, you may wonder about your own risk. Our ALS & Genetic Counseling and Testing for Family Members guide walks you through how predictive genetic testing works, what a genetic counselor can help you understand, and how to prepare for your first appointment.

Genetic counseling can be a valuable step if two or more people in your family have a related condition. It’s also a powerful tool for family planning, research participation, and emotional support. Importantly, meeting with a genetic counselor doesn’t mean you need to be tested.

Whether you’re ready to learn more or unsure where to start, this guide can help you make informed decisions at your own pace. 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.

Glenn Krietsch

Patrick Walker

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.