Kevin Dispensa never planned to run a marathon. But when his best friend from high school, Ross, suggested they tackle the Chicago Marathon in honor of Kevin’s mom, Janie Gobeli, everything clicked. Now, Kevin, his brother, his dad, and three …
Neuromuscular Disease Organizations Urge Withdrawal of Proposed Federal Funding Rule
July 13, 2026 Russell Vought, Director Office of Management and Budget Executive Office of the President 725 17th Street NW Washington, DC 20503 Re: Neuromuscular Disease Patient Advocacy Organization Comments on the “Regulation for Federal Financial Assistance” Proposed Rule – …
July 2026 Foundation eNews
Kravitz Krew is going 22-years strong at the ALS Walk for Life For Gary Kravitz, the ALS Walk for Life is a tradition over two decades in the making. Since his first Walk at Montrose Harbor in 2004, Gary and …
Finding the exact target for potential ALS drug
More than 15 years ago, Northwestern University professor Richard Silverman set out to discover a small molecule compound that could prevent toxic protein aggregation in the brain. From that journey came NU-9, a drug that prevents the aggregation of the …
Faces of ALS: A 45-Year Friendship on the Run
Kevin Patula (left) and Chris Fusco at Paw Paw Lake in Michigan, July 2025 Kevin Patula and Chris Fusco became close friends in first grade. More than 45 years later, they’re navigating a diagnosis that neither saw coming — and …
Leading ALS Organizations Call for Swift Passage of the ACT for ALS Reauthorization Act
June 18, 2026 The Honorable Mike Johnson, Speaker U.S. House of Representatives H-232, The Capitol Washington, D.C. 20515 The Honorable Hakeem Jeffries, Minority Leader U.S. House of Representatives 2267 Rayburn House Office Building Washington, DC 20515 Re: Please Swiftly Pass …
June 2026 Foundation eNews
Unite with us along the lakefront for a world free from ALS Join us at Soldier Field on Saturday, Oct. 24, for the ALS Walk for Life — the largest ALS walk in the Midwest. Registration is officially open, and …
Researchers discover cause of neuron excitability in ALS, leading to new potential treatment
Digging deep into the molecular mechanisms behind ALS, researchers at the Les Turner ALS Center at Northwestern Medicine have discovered why nerve cells overfire in the disease. Not only that—they have also designed a new drug to stop this overfiring, …
June 2026 Foundation eNews
You helped us raise awareness all May With ALS Awareness Month coming to a close at the end of last month, we wanted to acknowledge once more the community members who made these videos possible. Throughout the month, we focused …
Together, We Helped Secure $300,000 for ALS Care and Research in Illinois
This year marked an important achievement for the ALS community in Illinois with the approval of $300,000 in state funding for ALS care and research. State funding will help expand care coordination, increase support for families, improve access to multidisciplinary …
