How We’re Living With Purpose in Our Struggles With ALS

This past weekend, my husband, Todd, coached our son, Isaac, in making and installing a shelf in our daughter’s bedroom. It was a corner shelf with an obtuse angle, so they had to measure the angle, cut the boards to fit, and join the two halves of the shelf together.

Researchers at Brigham and Women’s Hospital (BWH) have received a grant from the ALS Association to study foralumab nasal spray as a potential treatment for amyotrophic lateral sclerosis (ALS). The Lawrence & Isabel Barnett Drug Development Program grant was awarded to the Ann Romney Center for Neurologic…

The treatment development company Verge Genomics — known for its all-in-human artificial intelligence platform — has been named among the “Fierce 15” by daily email newsletter Fierce Biotech. Verge’s inclusion by the web resource in the 20th annual Fierce 15 listing, announced in a company press release,…

An email that landed in my inbox the other day made me sit up and take notice. It was from a dear friend who is a care services coordinator for the ALS Association of Wisconsin. She shared a link to an article about a recent study on mindfulness and…

PrimeC, an experimental combination treatment for amyotrophic lateral sclerosis (ALS) being developed by NeuroSense Therapeutics, was well tolerated and lowered disease biomarkers in an open-label Phase 2 clinical trial. That’s according to the study, “Combination of ciprofloxacin/celecoxib as a novel therapeutic strategy for ALS,” published…

RT001, an investigational treatment for amyotrophic lateral sclerosis (ALS), shows promising signs that it can slow disease progression, particularly among patients with more severe disease, according to data from a completed Phase 2 pilot trial. While these findings indicate improvements in patients on RT001 treatment, statistical significance was…

Amylyx Pharmaceuticals has donated data from the CENTAUR Phase 2 trial to the PRO-ACT database — the largest collection ever compiled of de-identified amyotrophic lateral sclerosis (ALS) patient records from clinical trials. CENTAUR (NCT03127514) evaluated the safety and efficacy of Amylyx’s investigational treatment AMX0035 against a placebo…

After my husband, Jeff, died from ALS in 2020, I found a video he’d taken by mistake right around the time of his diagnosis. He’d left his phone on and unintentionally recorded three minutes of his expression while sitting in our yard in the November cold, drawing on…

Last week at Walgreens, the cashier asked me if I got the senior discount. I’ve never been asked that before, but perhaps the stress of caring for my disabled husband has finally caught up to me. “How old do you need to be to be considered a senior?” I asked.

Kulicke & Soffa Industries has announced a multi-year donation that ultimately will increase amyotrophic lateral sclerosis (ALS) patients’ access to potentially life-saving treatments. The contribution, for which an amount was not specified, will establish and support the multicenter expanded access protocol (EAP) companion program to the HEALEY ALS…