“Everybody’s talkin’ at me, Can’t hear a word they’re sayin’, Only the echoes of my mind.” – Fred Neil ALS has rendered me a minimalist creature of habit. My weekday routine includes the intersection of paranoid caution, practiced routine,…
A committee with the European Medicines Agency favors designating Seelos Therapeutics‘ investigational therapy SLS-005 (trehalose) an orphan drug as a potential treatment of amyotrophic lateral sclerosis (ALS), the company announced in a press release. The opinion, issued by the Committee for Orphan Medicinal Products (COMP), will now go to the…
Like many newly diagnosed ALS patients, I was overwhelmed by the steep learning curve of finding out more about the disease. Never mind having to jump in and help raise funds for it. Every time May rolled around with ALS Awareness Month, I was uncertain about how I fit…
National Amyotrophic Lateral Sclerosis Awareness Month, recognized in the U.S. each May since 1992, continues to unite patients, family, friends, and advocacy groups around shared goals of raising public awareness and research support. This year’s efforts continue to recognize and support those living with…
Registration is now open for fundraising events at four championship golf courses, whose fees will be used to fund research, care, and advocacy for neuromuscular disorders such as amyotrophic lateral sclerosis (ALS) and muscular dystrophy. According to the…
Perspective from Robert Bucelli, MD, PhD Dr. Robert Bucelli is a professor and neurologist at Washington University in St. Louis. He consults and cares for many people with ALS at the school’s world-renowned ALS Center. Dr. Bucelli is a paid consultant for Biogen and was compensated for this article.
People with very rapidly progressing familial amyotrophic lateral sclerosis (ALS) caused by mutations in the SOD1 gene may gain early access to Biogen’s experimental therapy tofersen by mid-July, the company announced. This marks the first part of Biogen’s planned access program for tofersen, and will begin after patients initially assigned…
Life is unpredictable. People get in car accidents. They have heart attacks. Tornadoes strike. I recently saw a viral video in which a rabid bobcat attacked a woman outside her home. We never really know what will happen next, and yet, we humans usually live with optimism for the…
Applications for a $60,000 one-year grant are now open for researchers working to discover or validate biomarkers for amyotrophic lateral sclerosis (ALS) or a similar disorder. Those interested in trying for this award need to submit a letter of intent as to their project’s nature and intent by May 7.
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 Virtual AAN Annual Meeting, April 17–22. Go here to read the latest stories from the conference. Amyotrophic lateral sclerosis (ALS) patients require walking aids, ventilation support, and/or speech generation devices about 1.5 years after starting treatment with…
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