Finding Support and Community When Living With ALS

When my late husband, Jeff, was diagnosed with ALS in October 2018, I remember the early, seemingly insurmountable feelings of fear and bewilderment. I remember understanding that we were out of our depth in a completely foreign world of symptoms, appointments, and terminology, layered with the unbelievable knowledge…

We had another close call last week. I was out mowing the fields while a nursing assistant was caring for my husband, Todd. She was one of his first caregivers after he lost his ability to walk and bathe himself due to ALS. At the time, Todd still…

Deep machine-learning models using neural networks — computer algorithms inspired in the biological networks of the human brain —may help to predict the course of amyotrophic lateral sclerosis (ALS), a new study reports. The models also consistently showed that a longer delay between disease onset and diagnosis is a…

Starting treatment with riluzole earlier in the disease course could prolong overall survival for people with amyotrophic lateral sclerosis (ALS), a database study suggests. A one-year delay in beginning with riluzole may lower median survival by 1.9 months and a two-year delay by a median of 4.9 months, its…

Ask me what I think about having a do-the-same-thing-every-day routine and I’ll tell you it is great. Especially now that I live with ALS, having and following a consistent daily routine is absolutely vital to my health. A daily routine is something almost everyone has experienced at some point…

The U.S. Food and Drug Administration (FDA) is funding several novel research projects related to amyotrophic lateral sclerosis (ALS) and other rare neurological disorders through its orphan drug grants program. In total, the regulatory agency has awarded 19 new grants and two contracts, providing more than $38 million…

The Wyss Center for Bio and Neuroengineering is planning to launch a trial of its wireless brain computer interface (BCI), called ABILITY, in enabling people to communicate using only their thoughts. The study is expected to involve people in locked-in states — in which they are fully aware, but unable to…

Just when we think life has dealt us the worst hand possible, along comes someone whose circumstances make ours look a little less daunting. I’ve experienced that feeling a few times in a support group I attend and when online. But one of the most difficult hands I’ve seen in…

Dazucorilant, Corcept Therapeutics‘ investigational cortisol modulator for people with amyotrophic lateral sclerosis (ALS), is being evaluated in a Phase 2 clinical trial. The DAZALS Phase 2 study (NCT05407324) aims to determine dazucorilant’s safety and efficacy against a placebo in about 198 adults with ALS. It will be…

“Two are better than one,/ because they have a good return for their labor:/ If either of them falls down,/ one can help the other up./ But pity anyone who falls/ and has no one to help them up.” — Ecclesiastes 4:9-10 (NIV) Because my husband, Todd, has…