Advocates and lawmakers are racing against a looming September deadline to prevent a “funding cliff” for critical amyotrophic lateral sclerosis (ALS) research and treatment access. The ALS Association is now throwing its full weight behind the newly reintroduced ACT for ALS Reauthorization Act (H.R. 8205), a bipartisan push…
Advocates push for swift passage of ACT for ALS reauthorization bill
Some days, my life with ALS feels like I’m trying to force a square peg into a round hole. On second thought, forget “some days” — I feel that way almost every day. There are the small irritations, such as having to wrestle with uncooperative Velcro on my…
Shionogi has completed its acquisition of global rights to Radicava and Radicava ORS, two edaravone formulations approved to treat amyotrophic lateral sclerosis (ALS), from Tanabe Pharma, finalizing a deal announced late last year. When it signed the agreement, Tanabe said it would establish a U.S.-based company to…
A large-scale genetic analysis has identified several new rare mutations linked to amyotrophic lateral sclerosis (ALS), with findings suggesting that about a quarter of patients have an identifiable genetic contributor to their disease, according to a new study. The results, which come from an analysis of nearly 18,000 people…
People living with amyotrophic lateral sclerosis (ALS) in the U.S. generally prefer care models where they can see multiple healthcare providers during the same visit, rather than only regularly seeing a neurologist who refers them to other doctors as needed, according to a new study. The findings have important…
Up to six people with advanced amyotrophic lateral sclerosis (ALS) will be treated with Trethera’s experimental therapy TRE-515 under a collaboration with Massachusetts General Hospital (MGH). The patients will receive the oral treatment through a U.S. Food and Drug Administration (FDA) expanded access program (EAP), which allows people…
When my husband Todd’s new power wheelchair was delivered, he tried a device that allowed him to control it with his eyes. It included software running on a tablet computer and an eye-tracking system mounted to the front of the chair. He found the system frustrating because he was…
A pivotal Phase 3 clinical trial testing pridopidine, an experimental oral therapy being developed by Prilenia Therapeutics and Ferrer, in people with early, rapidly progressive amyotrophic lateral sclerosis (ALS) has enrolled its first participant. PREVAiLS (NCT07322003), which was cleared late last year by the…
Brooke Eby, who was diagnosed with amyotrophic lateral sclerosis (ALS) in 2022 at age 33, has been named the ALS Network’s 2026 Dean and Kathleen Rasmussen Advocate of the Year for turning her personal experience as an ALS patient into a platform for advocacy, community building, and awareness. The…
Tanabe Pharma Canada has announced the publication of a new book featuring personal letters from people living with amyotrophic lateral sclerosis (ALS) and their families, with contributions from advocates, healthcare professionals, and researchers. The book, “Letters to ALS: Our Journeys to Hope,” is available free of charge to…
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