“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,…
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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…
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…
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…
My husband, Todd, and I had our second doses of the COVID-19 vaccine last week. The side effects from the first shot hadn’t been bad for either of us — just minor headaches — but the second one hit us harder. Todd woke with extreme chills at 2:30 a.m.
“Tracing your footprints in the sand, Trying to walk like a man, … But I didn’t think there’d be so many steps I’d have to learn on my own. Well I was young and I didn’t know what to do,…
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. People with amyotrophic lateral sclerosis (ALS) associated with mutations in the C9orf72 gene have early and more…
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. In a Phase 1 trial for amyotrophic lateral sclerosis (ALS), the investigational therapy AP-101 — designed to ease…