Facing the Rarefied Air of ALS with Dignity

“I don’t want to belong to any club that would have me as a member.” That sentiment, expressed by comedian Groucho Marx in 1949 about his affiliation with a particular social organization, was exactly my reaction in learning of…

Aiforia Technologies and NeuroScience Associates (NSA Labs) are collaborating in an effort to learn more about how amyotrophic lateral sclerosis (ALS) affects brain function. The project leverages NSA Lab’s neuroscience expertise and Aiforia’s artificial intelligence (AI) know-how. It came about after the donation of the entire…

The other day, I was chatting with a friend about Rare Disease Day. Wait, what? You don’t know about Rare Disease Day? Well, don’t feel bad. Last year I missed it, thinking it was just another ho-hum awareness event. But I’ve learned the value of events such as this…

Biotech company EnClear Therapies has announced $10 million in financing to help advance its proprietary platform for stopping the progression of neurodegenerative disorders, including amyotrophic lateral sclerosis (ALS). The investments comes from a Series A financing round, which is part of an early development stage for start-up…

Mutations in the C9ORF72 gene, the most common cause of amyotrophic lateral sclerosis (ALS), lead to changes in how cells process ribonucleic acid (RNA) and protein, a new study shows, shedding light on the mechanisms through which such mutations…

Neuropore Therapies was awarded a $500,000 grant from The ALS Association to advance in preclinical work its neural protective candidate, NPT1220-312, as a potential treatment of amyotrophic lateral sclerosis (ALS). The company is aiming to bring its molecule into clinical testing late next year. NPT1220-312 is a…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

One of my biggest concerns is how my husband’s ALS will affect our children. They were both under 5 when Todd was diagnosed and while they are growing up, their father continues to lose strength. A couple of years into the disease, I was fastening Todd’s seat belt as our…

The protein synaptotagmin 13 (SYT13) protected motor neurons from degeneration in cell and animal models of amyotrophic lateral sclerosis (ALS) and spinal muscular atrophy (SMA), a study reports, suggesting a gene therapy based on this protein’s related gene, SYT13, would treat these and other diseases of motor nerve cells.

“Lately it occurs to me what a long, strange trip it’s been.” –Grateful Dead, “Truckin’“ Last month, I quietly acknowledged the 13th anniversary of my ALS diagnosis. As in years past, I mentioned the occasion’s passing to no one. Instead, the…