Nature and community feed my soul as an ALS caregiver

Repurposed drugs fail to slow disease progression in ALS trial

Neither memantine nor trazodone, two medications approved to treat other conditions, was able to slow disease progression in people with amyotrophic lateral sclerosis (ALS) who took part in a platform clinical trial, a study concluded. Based on the lack of benefits in the trial’s interim analysis, the two treatment…

NP001 seen to extend survival, preserve lung function with ALS

Neuvivo’s investigational therapy NP001 (sodium chlorite), designed to dampen inflammation and restore immune system balance, extended survival in people with amyotrophic lateral sclerosis (ALS), according to an combined analysis of data, spanning up to 11 years, on patients who took part in either of two Phase 2…

I choose to be optimistic, even though I have ALS

One day, about four years after my diagnosis of ALS, I began having trouble pronouncing words. My tongue felt thick and couldn’t form words at the speed I was thinking them. My speech came out garbled and my brain hurt from trying to overcome the disconnect. At the time,…

EMA’s CHMP upholds its negative opinion on masitinib for ALS

An advisory committee from the European Medicines Agency (EMA) has upheld its opinion against granting conditional marketing authorization to AB Science’s masitinib as an oral add-on treatment for amyotrophic lateral sclerosis (ALS) in the European Union. The decision was taken in a meeting by the Committee for Medicinal…

ALS and the heavy burden of grief

It was six years ago last week that my late husband, Jeff, and I sat in a neurologist’s office in Maryland as the doctor said, “I believe that this is ALS.” Moments before, I’d been watching the doctor administer a second electromyography (EMG) on Jeff, who found the procedure…

Initiative to use AI technologies to improve communication in ALS

The Scott-Morgan Foundation (SMF), a nonprofit that’s pioneering assistive technology innovation, will lead a new initiative using artificial intelligence (AI) technologies to help people with diseases like amyotrophic lateral sclerosis (ALS) to better communicate and maintain their sense of identity. “We live in a world where millions are…