All articles tagged with #als
Steve Gleason, the New Orleans Saints player who blocked a punt in the 2006 'Domecoming' game, has used that moment's visibility to sustain his 15-year battle with ALS. As the 20th anniversary approaches, Gleason is releasing a music album and participating in extensive media tributes.
Steve Gleason, the New Orleans Saints legend who blocked a punt in the 2006 'Domecoming' game, is honoring the 20th anniversary of that match while continuing his 15-year fight with ALS. Gleason, who now communicates via eye-tracking technology and relies on a ventilator, credits the historic 2006 victory for providing the visibility that sustained him and his advocacy nonprofit, Team Gleason. The upcoming Monday Night Football game against the Atlanta Falcons serves as a major tribute to the city's recovery from Hurricane Katrina, featuring extensive media coverage and community honors.
Brooke Eby, a Montgomery County resident and prominent ALS advocate, has died at age 37. Diagnosed at 33, she used social media to humanize the disease and founded ALStogether, a peer support network. In 2026, she integrated ALStogether with the ALS Network and received the Dean and Kathleen Rasmussen Advocate of the Year Award. Her legacy includes raising over $1 million for research and reshaping public understanding of ALS through candid, humorous storytelling.
Brooke Eby, a TikTok star and ALS advocate who used humor to humanize a terminal diagnosis, has died at 37. She built a massive online community for patients and raised over $1 million for research.
Brooke Eby, a TikTok star and ALS advocate who used humor to humanize a terminal diagnosis, has died at 37. She built a massive online community for patients and raised over $1 million for research.
A Swedish mother with ALS delayed telling her teenage son about her diagnosis for years, fearing the impact, until his return home forced the conversation. Experts warn that withholding such news can fracture trust, while transparency helps children process grief and maintain emotional resilience.
A Stanford-led study published in Nature Neuroscience on September 18, 2026, argues that the human brain is not a single unified organ but a composite of two distinct systems. Researchers found that the forebrain/midbrain and hindbrain arise from separate progenitor cells during embryonic gastrulation, marked by different genes (Otx2 and Gbx2) and chromatin structures. This discovery explains why hindbrain neurons were previously impossible to grow in labs and enables new research into diseases like ALS and spinal muscular atrophy.
A Phase 3 trial of ulefnersen, the RNA-targeted ALS drug from Ionis and Otsuka, met its primary endpoint in the rare FUS-ALS form, with 73 of 89 enrolled patients in the primary analysis showing improved outcomes on functional and survival measures and favorable safety. Secondary endpoints and a biomarker signal also favored the drug, supporting discussions with regulators about expedited approval. The rarity of FUS-ALS limits market opportunity; Ionis will collect royalties on sales after a $10 million upfront license, with analysts forecasting modest long-term revenue compared with other Ionis programs.
A man with a rare CHCHD10-linked ALS mutation received an antisense oligonucleotide RNA therapy; a year later his motor and neurological scores improved, breathing function remained stable, and neurofilament-light levels returned to normal, with no serious side effects, suggesting mutation-targeted RNA therapies could extend to other ALS patients—though more people and longer follow-up are needed.
Stanford researchers found the front and hindbrain arise from distinct cell groups with different genetic instructions during gastrulation, suggesting the brain is two separate organs that later fuse. The team also generated hindbrain motor neurons from stem cells, a breakthrough that could accelerate research and potential therapies for neurodegenerative diseases such as ALS and SMA.
Novartis has halted its ALS program for VHB937/lifonebart after a phase 2 trial failed to meet primary and secondary endpoints in 251 early-stage ALS patients. While TREM2 remains a target of interest for neurodegenerative diseases, the trial's negative result undermines ALS prospects for the drug and led the company to discontinue ALS development, though the candidate continues to enroll in Alzheimer’s trials. The setback, amid other recent R&D disappointments for Novartis, coincides with a strategic push into brain delivery technology via a $125 million Sironax deal to bolster neuroscience efforts.
Novartis has scrapped development of its Phase 2 ALS candidate targeting TREM2 after disappointing trial results, effectively ending the program, according to Endpoints News.
The Tennessee Titans postponed the official Ring of Honor induction for Chris Johnson because he and his family cannot travel to Nashville for this weekend's game due to unforeseen circumstances. The team will still celebrate Johnson at halftime and reschedule the induction for a future date; Johnson revealed this year that he has ALS and spent six seasons with the Titans (one with the Jets).
The Tennessee Titans postponed Chris Johnson’s Ring of Honor induction to the 2026 season because he and his family cannot travel to Nashville for the game. The halftime ceremony will still honor his on-field achievements. Johnson, a 2008–2017 Titan, revealed an ALS diagnosis in 2025 after a storied career including a 2,006-yard season in 2009 and 7,965 rushing yards with 50 TDs for Tennessee.
A Sports Illustrated profile follows former NFL star Chris Johnson as his ALS rapidly progresses since his 2025 diagnosis, detailing daily care, the unwavering support of his wife and children, and his deep desire to spend precious time with loved ones while doctors pursue treatments and he reflects on his football career and Hall of Fame hopes.