How My Daily Routine Helps Me Live With ALS

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…

A cholesterol-related protein, called apolipoprotein A1 (ApoA1), can prevent the death of endothelial cells — those lining blood vessel walls — in a cell model of amyotrophic lateral sclerosis (ALS), a recent lab study shows. According to researchers, these results “show promise for ApoA1 as a therapeutic agent to…

The U.S. Food and Drug Administration (FDA) is extending by three months its review of tofersen, Biogen’s investigational treatment for forms of amyotrophic lateral sclerosis (ALS) caused by mutations in the SOD1 gene. Earlier this summer, the FDA granted the application priority review, with a decision expected no…

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…