Kenny Muñoz doesn’t dwell on the hardest months. When he thinks of his sister Vanessa, he thinks of her dancing, laughing, and holding court at a rooftop party — the kind of person who’d have the best time in the …
September 2026 Foundation eNews
Team Arrivederci ALS isn’t waving the white flag. Mike Leopold’s dad was diagnosed with ALS in early 2024, shortly after hand surgery revealed a discrepancy in tests. “I believe we can choose to let this destroy us or unite us,” …
ACT for ALS Reauthorization passed by Congress
On Sept. 28, 2026, Congress passed the ACT for ALS Reauthorization Act, extending critical research and expanded access programs through 2031. The bill now heads to the President’s desk to be signed into law. Since its enactment in Dec. 2021, …
Finding a Favorite Part of Every Day: Brady Beck and Team Race for ALS
When Brady Beck lines up at the 2026 Bank of America Chicago Marathon, he’ll be running with more than qualifying for Boston on his mind. He’ll be running for his dad. Dan Beck battled ALS from 2019 to 2021. Throughout …
Positive Phase 3 results for FUS-ALS treatment
Otsuka and Ionis have announced that ulefnersen, an investigational treatment for FUS-ALS, met its primary endpoint in the Phase 3 FUSION trial. It is the first FUS-ALS trial ever to do so. The companies report: The study met its primary …
September 2026 Foundation eNews
Walking for Stephanie keeps her light shining Stephanie Kennedy was, as her daughter Elizabeth describes her, “the brightest light in the room.” When Stephanie was diagnosed with ALS in February 2020, that light never dimmed — it simply found new …
ALS Organizations Urge Congress to Pass the ALS Better Care Act
Senate Majority Leader John Thune 511 Dirksen Senate Office Building 100 Constitution Ave, NE Washington, DC, 20510 Senate Minority Leader Chuck Schumer 322 Hart Senate Office Building 120 Constitution Ave, NE Washington, DC, 20510 Speaker of the House Mike …
Running for Dad: Kayleigh Massengill Brings Her Father’s Legacy to Chicago
When Kayleigh Massengill lines up for the Chicago Marathon this October, she’ll be running for more than a finish line. She’ll be running for her dad, Scott — and for every family facing ALS. Kayleigh, who lives in Manhattan’s Kips …
September 2026 Foundation eNews
From a team of three to a growing force: Special Agent Marshman returns When Cliff Marshman was diagnosed with ALS in September 2024, the very next day was the ALS Walk for Life. His wife knew she had to do …
August 2026 Foundation eNews
Getting the gang back together: Rob Akins and the joy of Rob’s Mob For more than 20 years, Rob Akins has lived with ALS — and for the past three, he’s walked with Rob’s Mob, the team that bears his …
