How I Learned to Listen to Unspoken Words as We Lived With ALS

My late husband, Jeff, had a motorized scooter that gave us the freedom to move and travel as his ALS progressed during the summer of 2019, our first full summer living with the condition. The scooter was one of the first things Jeff ordered from Amazon as his…

“Find the victory in this.” For nearly three decades, I’ve carried these five provocative words in my mind. Like my life, their meaning to me has evolved over time. I first heard them spoken at the funeral of a young woman, and the comment was directed to her 15-year-old son,…

The U.S. Food and Drug Administration (FDA) notified Brainstorm Cell Therapeutics that it will not accept for review a company application asking that its cell-based therapy NurOwn be approved as a treatment for amyotrophic lateral sclerosis (ALS). The FDA decision, in the form of a refusal to file…

I sometimes dream my husband, Todd, is calling for me at night. I wake and check the time. If it’s after 5 a.m., I know his nighttime caregiver has left, so I check on him to see if he needs to be turned, have a limb adjusted, or an itch…

Radicava Oral Suspension, an oral formulation of edaravone, has been approved in Canada for treating amyotrophic lateral sclerosis (ALS). Mitsubishi Tanabe Pharma Canada (MTP-CA), the subsidiary of Mitsubishi Tanabe Pharma America that markets Radicava in Canada, has announced plans to make the oral formula available to patients…

The investigational cell-based therapy NurOwn may slow disease progression in people with amyotrophic lateral sclerosis (ALS) who have less severe disease, according to analyses from a Phase 3 trial. Researchers’ analyses excluded patients with the lowest scores on the ALS Functional Rating Scale–Revised (ALSFRS-R) or in individual…

A question I’m often asked by newly diagnosed ALS patients is, “What do you think is the one thing that helped you adjust so well to living with ALS?” My answer is always the same: There’s no one thing; it’s the synergy of many strategies and habits that have…

Early declines in neurofilament light chain (NfL), a biomarker of nerve cell damage, after treatment with tofersen may predict a slower disease progression over time in people with SOD1-associated amyotrophic lateral sclerosis (ALS). Patients who received tofersen early also experienced a significantly slower worsening of clinical function than…

Continuous monitoring of certain biomarkers in people with amyotrophic lateral sclerosis (ALS) may inform about the risk of disease progression and the response to edaravone, according to interim data from the ongoing REFINE-ALS biomarker study. Mitsubishi Tanabe Pharma America (MTPA), the developer of edaravone, recently shared these findings…

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Stealth Biotherapeutics’ investigational therapy SBT-272 for the treatment of amyotrophic lateral sclerosis (ALS). Aimed at speeding the development of new treatments for rare, life-threatening diseases, orphan drug status offers regulatory support and certain financial incentives…