I didn’t react when a spine care specialist mentioned ALS as a possible cause of my husband’s weak arm, because I didn’t know what ALS was. Todd and I talked about daily life during the drive home from the appointment, and it wasn’t until later that evening when the kids…
ALS Is Rare, but My Husband Is Part of a Broader Rare Community
A neurotoxic amino acid called β-N-methylamino-L-alanine (BMAA) fed to vervet monkeys caused damage to the spinal cord similar to what is seen in amyotrophic lateral sclerosis (ALS), potentially making them a much-needed new animal model for research, a study reported. Adding L-serine, a non-toxic amino acid, to their diet…
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those looking to begin the complex process in its Feb. 20 webinar. William Whitman…
“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…
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Living Well On the Rare Side
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…
News
Enclear Receives Key Funding to Advance Therapies that Clear Toxic Proteins from Brain, Spinal Cord
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…
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