Last January, my sister-in-law asked what our plans were for my daughter Sara’s high school graduation. She wondered if she, my mother-in-law, and my husband’s siblings should plan to come for the commencement ceremony or a graduation party some other weekend. My husband Todd’s breathing is so compromised due to…
Clene Nanomedicine has nearly doubled the enrollment cap for a soon-to-launch expanded access program (EAP) to allow more patients to receive CNM-Au8 — its investigational treatment for amyotrophic lateral sclerosis (ALS) — outside of clinical trials. Also known as a compassionate use program, the EAP will…
“Why are you bouncing?” my daughter asked me the other day as I prepared the medications and supplements that I give my husband, who has ALS, through his feeding tube. “It’s good for mental health,” I said. I’m always on the lookout for strategies to cope with the…
The Les Turner ALS Foundation, in an effort to boost and diversify clinical trial participation, has written a step-by-step guide to inform people on why clinical research in amyotrophic lateral sclerosis (ALS) needs a diverse pool of participants, how to join clinical research, and what to expect when…
From the moment I wake up to when I finish breakfast, I do things in the same order as I’ve been doing them for the past 10 years. That’s because my secret dream is to be calm, relaxed, and easygoing each day. But the steady flood of life’s curveballs,…
The fourth annual Major League Baseball (MLB) Lou Gehrig Day takes place on June 2, a date set aside to pay tribute to the legendary New York Yankees first baseman whose career was halted by amyotrophic lateral sclerosis (ALS). The Muscular Dystrophy Association (MDA) will again play…
An old adage says, “Do something today that your future self will thank you for.” Well, I’m in that future now, so today, I’m sending my past self a basket full of thanks. Why? Because every time I walk into our bathroom, I’m grateful. And I believe the modifications my…
NeuroSense Therapeutics is collaborating with PhaseV for insights into how to better design the protocol for the planned Phase 3 trial that will test PrimeC for amyotrophic lateral sclerosis (ALS). A specialist in machine learning technology for clinical trials, PhaseV used data from the ongoing Phase 2b…
“It was easy, fun, and I’d do it all over again.” I know those are not the typical words used by someone who just finished participating in a research study, especially one focused on ALS. But that’s exactly how I felt last week when I pressed the submit button…
When I look back at photos from when my late husband, Jeff, was living with ALS — something I do often to find inspiration for this column — I’m struck by how many of our happier memories took place outdoors, even in the advanced stages of Jeff’s illness.
