Once in a while, a newly diagnosed ALS patient will reach out to me and ask for help in their adjustment to life with ALS. I’m always happy to share resources, motivation, and tips, and usually, I begin our online friendship with the question, “Tell me a little about yourself?”…

Thanks to a new partnership, every amyotrophic lateral sclerosis (ALS) patient in New Jersey, about 400 in total, will have free access to eye gaze technology that can aid them in communicating. As the name suggests, this assistive technology helps people with neurodegenerative diseases, such as ALS, to communicate…

Treatment with the investigational oral therapy masitinib can extend lifespan when given early in the course of amyotrophic lateral sclerosis (ALS), according to a new study. “These long-term survival data, with an average follow-up of 75 months since diagnosis, suggest that masitinib can offer a substantial survival benefit…

In keeping with its commitment to turn amyotrophic lateral sclerosis (ALS) into a “livable disease” by 2030, and to ramp up discovery and funding of new therapy candidates, the ALS Association is moving to a unified structure from a federated one. “Our best opportunity to fulfill this promise and…

I’ve been thinking about time travel after watching a couple movies with my husband, Todd, who has ALS. We enjoyed “About Time” during one of our date nights and “The Time Traveler’s Wife” during another. Both movies have subplots that involve love, marriage, and children. If time travel…

Verge Genomics and Eli Lilly have entered into a three-year collaboration to find and develop therapies for amyotrophic lateral sclerosis (ALS). Verge will focus on discovering and validating potential new therapeutic targets, while Lilly will select up to four candidates to advance through clinical testing with a goal of…

Among the many challenges of living with ALS are the physical symptoms of muscle stiffness and weakness. I have both. During my first year with ALS, I’d wake up and walk into the bathroom doing a good imitation of the clumsy, lurching steps of Frankenstein’s monster. On other days,…

Ubiquitination — the cell’s process of tagging proteins, often to degrade unwanted ones — is essential for the disassembly of stress granules that, by not being cleared, damage cells in amyotrophic lateral sclerosis (ALS) and other neurodegenerative diseases, a study showed. The study, “Ubiquitination is essential for…

Coya Therapeutics’ ALS001, a potential regulatory T-cell (Treg) therapy designed to halt amyotrophic lateral sclerosis (ALS) progression, has been granted an orphan drug designation by the U.S. Food and Drug Administration (FDA). Furthermore, a Phase 2a trial (NCT04055623) testing ALS001 versus a placebo in 12 ALS patients…

Strenuous, intense exercise done frequently is an environmental risk factor for amyotrophic lateral sclerosis in people with ALS risk genes, particularly those who carry a faulty C9ORF72 gene, a study concluded. Future research is needed to better understand and identify people at disease risk due to such exercise,…