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…
The nonprofit EverythingALS is teaming up with several biotech companies for a study into the feasibility of monitoring amyotrophic lateral sclerosis (ALS) progression in people via disease-specific biomarkers captured digitally at the home. The study will be open to adults with an ALS diagnosis or for whom ALS…
An extended-release formulation of PrimeC, an investigational combination therapy for amyotrophic lateral sclerosis (ALS), demonstrated a favorable pharmacokinetic profile in healthy adults in a Phase 1 trial, helping with an ongoing Phase 2b study and work into a potential pivotal trial in ALS patients. A pharmacokinetic (PK) study aims…
My 16-year-old-daughter, Sara, watched a TED Talk by Angela Duckworth on grit in her AP Language class. Sara was not impressed. “I don’t want to have grit,” she declared. Many of her high school friends are taking college math classes while she is on the standard math track. She sees…
