From a Devastating Diagnosis to “Embracing My Now” with ALS

FDA Shares Plan for ALS, Other Neurodegenerative Diseases

The U.S. Food and Drug Administration (FDA) has published on its website a five-year action plan meant to help advance the development of — and access to — treatments that may make life better and longer for people with amyotrophic lateral sclerosis (ALS) or other rare neurodegenerative diseases. The…

PrimeC Therapy Added to Standard Care Gets ALS Biomarkers Down

NeuroSense Therapeutics’ combination therapy PrimeC led to a significant decline in certain biomarkers of amyotrophic lateral sclerosis (ALS) when used as an add-on to standard of care treatment, a study found. Standard treatment alone, meanwhile, appeared to have no impact on these disease-related biomarkers. The preliminary results come from…

In Memoriam: Rick Jobus, Feb. 6, 1958-June 19, 2022

Courtesy of Rick Jobus It is with deep sadness that we inform the ALS News Today community of the passing of our friend and treasured columnist, Rick Jobus, on June 19, 2022. Rick published the first installment of his column, “Notes From the ALS Front,”…

I Just Received a Diagnosis of ALS. What Now?

Sometimes the simplest things can help us the most. That’s what I learned in the months right after I received a diagnosis of ALS. Like most newly diagnosed ALS patients, I felt overwhelmed trying to find out what ALS was, not really wanting to know, and just wishing…

At-home Music Therapy Program May Help Bulbar-onset Patients

An at-home music therapy program aimed at improving speech, swallowing, and respiration in people with amyotrophic lateral sclerosis (ALS) was well-tolerated and feasible, according to a small pilot study. While the pilot study (NCT03604822) was not designed to test the program’s effectiveness, collected data suggest that the music…

FDA Grants Orphan Drug Status to TQS-168 for ALS Treatment

The U.S. Food and Drug Administration has granted orphan drug designation to Tranquis Therapeutics‘ experimental therapy TQS-168 for treating amyotrophic lateral sclerosis (ALS). Orphan drug status is given to experimental therapies with promise for treating rare diseases — those affecting fewer than 200,000 people in the U.S.