Hoping for better technological solutions for people with ALS

Since my husband, Todd, was diagnosed with ALS 14 years ago, I’ve been on the lookout for technology that will improve his comfort and quality of life while making my role as his caregiver safer and easier. Moving Todd is hard on me physically. He’s a big guy, and…

Amyotrophic lateral sclerosis (ALS) patients who used NeuroSense Therapeutics‘ investigational therapy PrimeC for a year saw significantly slower disease progression and prolonged survival relative to patients who started the treatment six months later. That’s according to one-year findings from the PARADIGM Phase 2b clinical trial (NCT05357950),…

I like collecting buzzwords. These are the popular words or phrases that weave their way into and out of our language every year. In fact, I think writing this weekly column for the past seven years has sharpened my sensitivity to trendy jargon. Some are fun to use and…

An advisory committee of the European Medicines Agency (EMA) has recommended against granting conditional marketing authorization to masitinib as an oral add-on treatment for amyotrophic lateral sclerosis (ALS). The negative opinion by the Committee for Medicinal Products for Human Use (CHMP) confirms the committee’s view, announced last…

Being diagnosed with ALS felt like a crushing blow to Craig. As a former band director who mentored students, he knew his life would change. Discover how Craig found his new purpose and community to inspire.

BrainStorm Cell Therapeutics has reached an alignment with the U.S. Food and Drug Administration (FDA) on the chemistry, manufacturing, and controls aspects — known as CMC — of the company’s upcoming Phase 3b trial of NurOwn (debamestrocel), to be tested in people with amyotrophic lateral sclerosis (ALS). This…

In amyotrophic lateral sclerosis (ALS), nerve cells in the spinal cord responsible for inhibiting motor neurons are lost in the early stages of the disease, before the motor neurons themselves, according to a new study done in a genetic mouse model of ALS. The researchers also found that excitatory…

“Plan for what is difficult while it is easy, do what is great while it is small.” — Sun Tzu, “The Art of War”  In an earlier column, I noted that there was no handbook to show me how to deal with ALS. Looking back, I admit that…

On my first date with my late husband, Jeff, he rhapsodized about his family. He was the middle child of seven, and it was clear from the start that his brothers and sisters were a central part of his life. They’d grown up together in a home in Wyandotte, Michigan,…

I’m cautious about leaving my husband, Todd, alone because ALS has compromised his lung function. Todd can usually tell when mucus starts building up, so if his lungs are doing well, we’re comfortable with me running errands or attending events, as long as I’m not more than 15 minutes…