“What do you think about having one thimbleberry design on one side of a mug and a different one on the other?” I asked my husband, Todd. We’d been brainstorming ideas for some print-on-demand items that I might try selling. Todd has had a fixed income ever since he was…
A pivotal Phase 3 clinical trial testing the oral therapy pridopidine in people with amyotrophic lateral sclerosis (ALS) is expected to start in January, following promising results seen in the HEALEY ALS platform trial. Pending regulatory clearance, enrollment will begin at ALS treatment centers in the U.S., Canada,…
While my late husband, Jeff, was living with ALS, a close family member was diagnosed with colon cancer and required immediate surgery. Fortunately, the cancer had been caught early, and the surgery was successful in eliminating it without complications. The unexpected cancer diagnosis meant that we now had a…
Ionis Pharmaceuticals recently celebrated the 10th anniversary of its Surf Away+ program, a day of adaptive sports and beach fun that has welcomed people with amyotrophic lateral sclerosis (ALS) alongside those with other neurological diseases. Held Sept. 12 at the beach in Oceanside, California, the event brought together…
In a new initiative, Mosaic Neuroscience is teaming up with Ixcells Biotechnologies to develop patient-specific cell models that could lay the foundation for advancing precision medicine in amyotrophic lateral sclerosis (ALS). The pilot project is the first to be launched as part of Project Mosaic, an effort —…
Kristin Neva reflects on life with ALS alongside her husband, Todd, by sharing their experiences with accessible vans. She discusses the challenges of finding the right fit, the lessons learned over the years, and how adapting to change has shaped both their daily routines and cherished family memories.
Often I do some of my deepest thinking when I’m alone in the car. I regularly drive 35 minutes to ride my horse, and I like to spend that time in silence. That’s when I think about people to contact or items on my to-do list for the week ahead.
This summer, I’ve been superfocused on a special fix-up project — namely, my posture. Why? Because earlier this year, whether I was sitting, standing, or walking, I noticed a slow slump forward of my upper body. Oh, I’d always begin sitting tall, but somehow, I’d morph into a shorter me.
I remember the first caregiving task that I completed for my late husband, Jeff, after he was diagnosed with ALS in the fall of 2018. His symptoms had started with a foot drop, and by the time of his diagnosis, his right foot had become paralyzed. It became my…
When I checked my email last Wednesday morning, I was delighted to see a message in my inbox titled “Birthday Memories.” It was from my husband, Todd, who was still in bed sleeping; he must’ve scheduled the email to surprise me on my 48th birthday. I sat down with my…
