Mary Chapman,  features writer—

The Canadian Neuromuscular Disease Registry (CNDR) and Amylyx Pharmaceuticals are collaborating on an initiative that could produce the first real-world evidence on AMX0035, Amylyx’s investigational therapy to slow functional decline in amyotrophic lateral sclerosis (ALS) patients. The two, in partnership with neuromuscular centers across Canada, will collect…

To help support people living with motor neurone disease (MND), a group of disorders that includes amyotrophic lateral sclerosis, the My Name’5 Doddie Foundation has donated £100,000 ($135,000) to the MND Association. The association will use the funds to bolster its financial support grant program, which…

Cytokinetics has awarded a total of $100,000 to five nonprofit patient advocacy organizations to support efforts to enhance communications, increase disease awareness, and boost community engagement. Recipients of the fourth annual Communications Fellowship Grant Program include the Les Turner ALS Foundation, the Northern Ohio Chapter of The…

Ady Barkan was a new father and activist when, at age 32, he learned that he had amyotrophic lateral sclerosis (ALS). His ensuing fight for universal healthcare while dealing with the progressive neurodegenerative disease is at the center of  “Not Going Quietly,” a film debuting on PBS today,…

The National Institute of Neurological Disorders and Stroke (NINDS) is asking people across the amyotrophic lateral sclerosis (ALS) community to submit their preferences regarding what should be prioritized to accelerate ALS research. NINDS, which is part of the National Institutes of Health (NIH), is seeking contributions from ALS patients,…

A Lief Cares initiative, under its partnership with AxeALS, raised nearly $8,000 for the amyotrophic lateral sclerosis (ALS) community and is providing patients with specially formulated nutritional supplements. Lief Cares is the nonprofit donation program of the California-based formulation and product developer and dietary supplement manufacturer Lief Labs. Through…

A recent tweet by an Australian amyotrophic lateral sclerosis (ALS) patient using an implantable brain computer interface called Stentrode is said to be the first time a message has been posted on social media with the help of such technology. By using this brain computer interface, developed by…

The largest collection of amyotrophic lateral sclerosis (ALS) clinical trial data, amassed to help researchers globally find better treatments and potentially a cure for the progressive neurological disorder, was awarded the $50,000 Healey Center International Prize for Innovation in ALS. The Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT)…

If signed by President Joe Biden, the bipartisan Accelerating Access to Critical Therapies (ACT) for ALS Act will fund crucial research into fast-progressing neurodegenerative disorders such as amyotrophic lateral sclerosis (ALS) and provide patients with early access to promising treatment candidates. The legislation (HR 3537), which has passed the…

Calling it the “biggest challenge” of his life, a U.K. rugby fan and motor neurone disease (MND) advocate, Martyn Clarke, is undertaking a Herculean effort — seven Half Ironman triathlons in seven days — to raise funds for the MND Association. Clarke, 47, was inspired to push himself to…