US Senate ALS Caucus to advocate for policies, research

The bipartisan Senate ALS Caucus has been reestablished to heighten awareness of the needs of those living with amyotrophic lateral sclerosis (ALS), advance policies, improve patient support, and advocate for research investments. U.S. Sens. Chris Coons, D-Delaware, and Mike Braun, R-Indiana, reintroduced the caucus, which is now expanded with…

Before my husband, Todd, had ALS, our marriage had a normal rhythm to it. He’d go to work, and I’d care for our small children, filling their days with activities. Todd and I would reconnect each evening, sharing updates on our respective days. We took our kids on walks…

The recent conditional approval of Qalsody (tofersen) for adults with amyotrophic lateral sclerosis (ALS) who carry mutations in the SOD1 gene is a major cause for celebration, according to the Muscular Dystrophy Association (MDA). The therapy earned accelerated approval from the U.S. Food and Drug Administration (FDA)…

From left, Eric, Allie and Logan Coultas. (Photos courtesy of Allie Coultas) This is Allie Coultas’ story: My name is Allie, and I am a 32-year-old artist, wife, and mother. My husband, Eric, is 36, and my son, Logan, is 5. Eric was 33 when he was diagnosed…

A Phase 2b trial that’s testing PrimeC in people with amyotrophic lateral sclerosis (ALS) has reached 80% enrollment and is on track to complete patient recruitment by June, NeuroSense Therapeutics announced in a quarterly update. Called PARADIGM (NCT05357950), the study began enrolling ALS patients in…

Radicava (edaravone) significantly prolongs long-term survival for people with amyotrophic lateral sclerosis (ALS), according to an analysis of nearly 3,000 patients. It didn’t significantly slow the progression of disease symptoms, as assessed by scores on the ALS Functional Rating Scale-Revised (ALSFRS-R), however. The results were presented at last…

Daily oral treatment with memantine did not slow disease progression nor did it reduce biomarker changes among people with amyotrophic lateral sclerosis (ALS) enrolled in a Phase 2b trial. Approved under the brand name Namenda to treat cognitive problems in people with Alzheimer’s disease, memantine has also…

For 30 years in the medical field, Debra saw others find the courage to move forward with tough diseases. When she heard her ALS diagnosis, she knew what to do. Learn how Debra decided to get up every day and keep going.

Recognized each May, ALS Awareness Month provides an opportunity for people living with amyotrophic lateral sclerosis and their families — as well as healthcare professionals, researchers, experts, and advocates — to increase awareness and education in the community at large, and to raise funds, all in the hope of…

Making and keeping friends did not come naturally to me in childhood. I was shy, and my introversion and love of books often kept me curled up on the couch reading while other neighborhood kids biked and played tag. I craved the interactions I noticed other kids having,…