Facing Uncertainty in Life With ALS

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…

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.

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 with a short disease duration and fast progression showed better responses to Orion’s investigational oral…