Starting noninvasive ventilation sooner may yield survival benefit

On my birthday I had everything I wanted

A couple weeks ago, a friend asked me, “What are you going to do for your birthday?” “We’ll just have a family dinner and play games,” I said. “That’s all I want.” When my husband, Todd, and I were married, we might have gone on a weekend getaway or out…

MTPA to stop Phase 3 trial of approved Radicava ORS for ALS

Mitsubishi Tanabe Pharma America (MTPA), which had been testing a once-daily regimen of its oral therapy Radicava ORS (edaravone) for amyotrophic lateral sclerosis (ALS), announced that it is discontinuing the Phase 3b trial and its extension study. That decision comes after an interim analysis by an independent…

Can automated technology — including AI — help with ALS?

For a while now, I’ve been keeping tabs on the new technologies of virtual assistants, voice activation, and artificial intelligence (AI), especially its potential benefits for the ALS community. Some of it I’ve tried, with iffy results. Others, like AI, are on my wish list to help erase ALS…

Intranasal formulation helps edaravone reach brain: Early study

An into-the-nose (intranasal) formulation of edaravone — the active ingredient in the amyotrophic lateral sclerosis (ALS) medication Radicava — may enhance the medication’s ability to reach brain tissue, according to a recent study. The formulation, which was made by packaging edaravone into tiny carriers called nanoparticles, was found…

Researcher awarded $10K to advance work on ALS therapy

A professor at Massachusetts General Hospital and Harvard Medical School was awarded $10,000 by Mass General Brigham (MGB) for her work to restore the levels of stathmin-2, a protein that is disrupted in amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD), a related neurodegenerative condition, as a possible…

Reminiscing about our pre-ALS days brings joy

A family friend visited last week, prompting a trip down memory lane to the days long before my husband, Todd, had ALS. My teenage daughter and her boyfriend sat on the couch behind us, while Todd, our friend Abby, and I sat around the kitchen table sharing memories…