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…
The Motor Neurone Disease (MND) Association and Toyota (GB), the U.K. division of Toyota, have established a partnership to raise funds and improve awareness for the needs of people with disorders that include amyotrophic lateral sclerosis (ALS). The staff at Toyota (GB) selected MND Association as the company’s…
The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…
Family movie nights are great, but it’s a challenge to think of other things we can do together now that my husband, Todd, is paralyzed from ALS. I’ve long had a love-hate relationship with screens. I once envisioned myself as a mother who would encourage creative, independent play. My…
“One hundred bottles of beer on the wall, One hundred bottles of beer! Take one down, Pass it around, Ninety-nine bottles of beer on the wall!” That ditty was invariably sung, in unison, on all bus rides associated…
Amylyx Pharmaceuticals is planning to file an application by the end of this year requesting that the European Medicines Agency (EMA) approve AMX0035 as an oral treatment for amyotrophic lateral sclerosis (ALS). This follows a recent announcement that a similar application will be submitted to Health…
