My husband, Todd, was asked about his health over the Thanksgiving weekend as we caught up with some old friends. He and I explained that his breathing has been declining recently, that ALS has taken most of his lung function, and he now has to eat with his…
As ALS forces change upon us, I just do what needs to be done
A Phase 2 clinical trial to investigate Tiziana Life Sciences’ intranasal foralumab for the treatment of amyotrophic lateral sclerosis (ALS) has been accepted into the Healey ALS MyMatch program at Massachusetts General Hospital. The program, located at the Sean M. Healey & AMG Center for ALS, is a…
So what happens now? All of a sudden, I was on my own, left to navigate my world, which had changed forever. I was restless, not quite knowing what to do with myself or how to fill my time. I’d just spent the last two years fully focused on my…
The inspiration for this week’s column comes from a reader’s simple question: “How many mini-exercise sessions do you do a day?” My quick reaction was to think I’d already written quite a bit on the topic of exercise and ALS, and I’d just send along a few links.
The U.S. Food and Drug Administration (FDA) has authorized Neurosense Therapeutics to begin a pivotal Phase 3 trial of its experimental oral therapy PrimeC for the treatment of amyotrophic lateral sclerosis (ALS). The authorization follows the FDA’s positive feedback on the design of the PARAGON trial and…
The ALS Association is awarding $20,000 grants to 107 eligible clinics across the U.S. to help strengthen multidisciplinary care for people living with amyotrophic lateral sclerosis (ALS) and their families. The funding — totaling $2.14 million — comes from the Hugh and Herbert Hoffman ALS Impact Fund,…
My late husband, Jeff, grew up in a family of seven kids. The oldest and youngest were girls, with five boys in between. Jeff was right in the middle, which, he liked to explain with a laugh, made him the most well-adjusted. While all the kids were close, Jeff’s best…
We’ve been searching for a used car for our daughter, who’s in college. It’s been an interesting distraction for my husband, Todd, and me, because our days are often mundane. Our daughter is busy with classes, work, and dance, but because Todd has ALS and I am his caregiver,…
The ALS Network, in collaboration with ALS United, has announced the winners of the 2025 Research Innovation Grants, which support projects aimed at enhancing understanding and care for amyotrophic lateral sclerosis (ALS). This year’s group of 13 awarded research…
I’m looking forward to several events coming my way this holiday season. Not that my social calendar is filled up. Right now, I only have a few family get-togethers scheduled, all at restaurants with scrumptious buffets. (Yay!) I’ve learned, however, that holiday activities mixed with my ALS can add…
Recent Posts
- ALS Network, ALS United calling for ‘bold’ research proposals for funding
- Study finds common medications that could be repurposed to treat ALS
- New eye imaging approach may help distinguish ALS from Alzheimer’s
- After 15 years as an ALS caregiver, I’m still learning from others
- Early PrimeC use slows ALS progression, reduces complication risk