An impairment in the activity of the RNA exosome complex, which cells use to degrade defective RNA molecules, could contribute to amyotrophic lateral sclerosis (ALS) caused by mutations in the C9orf72 gene, a new study indicates. The study, “The RNA exosome complex degrades expanded hexanucleotide…
I cried again as I read yet another social media post by a caregiving spouse whose husband just died from ALS. ALS kills someone every 90 minutes, and I’ve made online connections with many caregivers, which means I frequently read of somebody’s loss. I cry hardest when another mom…
The Japan Patent Office has granted a patent to Brainstorm Cell Therapeutics covering the proprietary technique that generates the company’s cell-based therapy NurOwn from mesenchymal stem cells (MSCs). Through this technique, researchers can harness MSCs directly from a patient and mature them into cells that produce…
Hang on tightly, it’s another week of weather events, news alerts, and a continuing health crisis. I feel like I’m riding on a big airplane flying through rough turbulence. Certainly, living with ALS has taught me I can’t control the jiggles and the bumps, but I can control how I…
The National Institutes of Health (NIH) has awarded a $1.9 million grant to University of Missouri (MU) researchers to study ways of preserving essential functions like swallowing and breathing in people with amyotrophic lateral sclerosis (ALS) and other motor neuron diseases. This four-year grant was awarded to…
Microsoft opened its 2014 Super Bowl ad with the question: “What is technology?” As Steve Gleason, an ex-New Orleans Saints safety later diagnosed with amyotrophic lateral sclerosis (ALS), spoke about the power of technology, videos rolled of doctors manipulating 3D X-rays, a blind man painting,…
Lulu Wang’s film “The Farewell” is based on an actual lie. The 2019 comedic drama looks at a family’s decision to keep their matriarch ignorant of her stage IV lung cancer diagnosis with a prognosis of death in three months. Billi, a Chinese American woman, travels to China for…
Big news buzzed through the ALS community last week about AMX0035, an investigational treatment for ALS that just finished a Phase 2/3 clinical trial. Early results indicated that AMX0035 slowed the progression of ALS symptoms. Although discovering a cure for ALS is still the ultimate goal for…
Perspective can be hard to come by with ALS, but writing has helped me keep my head above water. I’ve kept a journal since I was a kid. I wrote my way through teenage angst, my musings during my college years, the challenges of trying to help the teens I…
A Phase 1 clinical trial of a gene-based therapy for amyotrophic lateral sclerosis (ALS) is now recruiting patients in one of its European centers. The Clinical Research Facility at St James’s Hospital Dublin, in Ireland, has enrolled its first patient and is one of four European centers to participate…
