Every moment is an opportunity.
It’s estimated that every 90 minutes, someone is diagnosed with ALS. But how many more minutes will pass before that person has the chance to receive care at a multidisciplinary ALS clinic that can extend their survival and improve their quality of life? How long will it take before they’re able to find a clinical trial or study that gives them hope for the future? How much more time can they spend with the people they love?
By attending events, making donations, and raising awareness, you’re making it possible to find the opportunity in every moment.
In 2025, this is how we turned your support into action.
Above: Led by Greg “Coach” Neal, the 80 members of Moving Mountains with Mustard Seeds raised over $100,000 at the 2025 ALS Walk for Life.
Fund ALS Research
- We funded over $1 million in ALS research grants and clinic and endowment support at the Les Turner ALS Center at Northwestern Medicine, sustaining these vital programs at the highest level in our history.
- Scientists at the Les Turner ALS Center published groundbreaking research into the causes of the disease, including:
- When a federal funding freeze threatened to bring years of progress to a sudden halt, we made an emergency $500,000 gift to Northwestern University Feinberg School of Medicine to ensure that ALS research and the pursuit of a cure would continue.
“This gift is a lifeline to our researchers, our talented doctoral students and our dedicated research staff.”
– Robert G. Kalb, MD, the Joan and Paul Rubschlager Professor of Neurology and Director of the Les Turner ALS Center at Northwestern Medicine
- We offered access to three clinical trials and six observational studies at the Lois Insolia ALS Clinic, along with three expanded access programs (EAPs).
- Thanks to funding from the Les Turner ALS Foundation, the Les Turner ALS Center at Northwestern Medicine was able to expand its clinical research team by two staff members and welcome Dr. Ryan Donaghy as a new sub-investigator, directly increasing enrollment in several important programs and studies.
- The Les Turner ALS Center was selected as one of only four sites to participate in a new early-phase research program called Healey ALS MyMatch. This innovative program helps match people with ALS to promising new treatments based on the biology of their disease.
- The Les Turner ALS Center participated in the Silence ALS Program, which focuses on clinical trials for people with ultra-rare genetic forms of ALS.
- We continued to partner with the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital on the ACE Initiative, strengthening research infrastructure and accelerating ALS clinical trial enrollment. Since its inception in 2024, enrollment has more than doubled across three sites, spanning clinical trials, EAPs, and observational studies — demonstrating that targeted investment in research capacity leads to faster and broader access to ALS research.
Enhance Quality of Life for People Living with ALS
“I don’t know what our family would have done without the help of Les Turner’s Support Services Team. Our coordinator, Rochelle, has been so helpful to us and has guided us during the most challenging experience in our family’s lives. Thank you for all that you do.”
– Experience of Care survey
- Our support services team held 4,684 care coordination meetings with people living with ALS, their families and loved ones, and caregivers.
- Our online support groups welcomed an average of 74 participants per month, up 12% from last year.
- We provided $176,668 in financial support through 107 needs-based grants, helping people cover expenses like home modifications, respite care, and transportation.
- We loaned 170 items such as wheelchairs, ramps, assistive technology, and other essential equipment to help ease the burden on families dealing with the daily challenges of living with ALS.
- With modules on breathing, nutrition, clinical research, and more, our My ALS Decision Tool™ helped 7,590 people explore their treatment options and make informed decisions about their care.
- We hosted 13 ALS Learning Series webinars with 1,827 views live and on YouTube, welcoming viewers from 48 U.S. states and 17 countries
Increase Our Leadership in the ALS Community
“I am also grateful to be in the presence of so many caregivers: doctors and nurses, occupational, physical, and speech therapists, social workers, and, most especially, friends and family. Your care and compassion for those living with ALS and other motor neuron diseases are an inspiration to me and to all people.”
– Pope Leo XIV, speaking at the ALS Walk for Life on Sept. 20, 2025
- In response to devastating cuts to federal ALS funding, we engaged policymakers and advocacy coalitions to protect FY25 ALS research As a result of these efforts, federal ALS funding levels were preserved in both House and Senate Appropriations Committees.
- We participated in campaigns addressing potential reductions to NIH, DOD, CDC, and FDA budgets. We also partnered with groups seeking to restore NIH funding for the ALLFTD network and preserve $40 million in Department of Defense ALS research funding that was at risk.
- We supported bills under consideration in the Illinois legislature to improve hospice and palliative care, close gaps in home-based care, enhance training for nursing home professionals, and remove barriers to wheelchair repair services. In August, those bills were signed into law.
- We helped train more than 70 community health workers across the state, in partnership with the Illinois Public Health Association and the HAP Foundation. In rural and underserved communities, these workers will help people connect to multidisciplinary ALS care and support sooner.
- In 2025, our website and online resources reached more than 177,000 users in 184 countries, recording a 160% increase in pageviews over the last five years.
- Pope Leo XIV’s appearance at our ALS Walk for Life was covered by every television news station in Chicago and media in several languages across the world.
“We felt so lost in getting the diagnosis but your foundation has been a blessing with all the guidance provided. Your foundation has helped us break down all aspects of his care and it helped make everything seem manageable. Our coordinator has listened to us cry, has followed up with my dad’s care team at the clinic, has helped us get equipment my dad needs, among many other things. Our family will forever be grateful.”
– Experience of Care survey
Your Support Makes It Possible
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.
