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…
MDA Golf Events to Support Neuromuscular Research, Patient Care
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…
Last week, I caught up with a friend I hadn’t seen in a while. After we chatted a bit about the challenges of the past year, she suddenly asked, “Isn’t it strange that they haven’t found a cure for ALS yet? I wonder what’s holding them back?” My mind…
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. More than one-quarter of amyotrophic lateral sclerosis (ALS) patients — with or without a family history of ALS — have…
Speech and oral therapy were added to covered services available by telemedicine for people with amyotrophic lateral sclerosis (ALS), which Medicare previously recognized only as in-person visits, during the COVID-19 pandemic. Medicare will now reimburse — at least through December 2021 — evaluations and treatments given by telemedicine…
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. A new clinical trial will seek to determine the optimal timing to begin treatment with the investigational medication tofersen in people…
More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…
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