A bipartisan team of U.S. congressional legislators is calling for increased funding to support research seeking to better understand and develop new treatments for amyotrophic lateral sclerosis (ALS). Congressman Jason Crow, a Democrat representing a district in Colorado, authored a letter to various congressional committees that has been signed…
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Someone in an online caregiver support group posted that they were finding value in using ChatGPT as a therapist. Other caregivers chimed in, saying they also turn to the artificial intelligence chatbot for support and find it surprisingly helpful. One person suggested prompting it to “respond like a counselor” or…
Toilets aren’t one of the topics that come up in most conversations, but for those of us living with ALS, it’s fairly common and not at all embarrassing. We’ll often chat about the use, style, and cost of electric bidets, for example. I’ve been using one for several years…
Al Freedman, PhD, a psychologist who specializes in rare disease communities, discusses how to manage social isolation while living with amyotrophic lateral sclerosis (ALS). He shares his background as a father to his late son Jack, who had spinal muscular atrophy (SMA), and how his role as a caregiver has…
The U.S. Food and Drug Administration (FDA) has granted fast track designation to AMX0114, an experimental therapy being developed by Amylyx Pharmaceuticals, for the treatment of amyotrophic lateral sclerosis (ALS). Fast track status is designed to facilitate the development and review of treatments that have the potential to address…
The U.S. Food and Drug Administration (FDA) has granted fast track status to usnoflast, Zydus Lifesciences’ experimental oral inhibitor, for treating amyotrophic lateral sclerosis (ALS). The designation is meant to accelerate the development and review of new therapies that address unmet medical needs in serious or life-threatening conditions, and…
The Everylife Foundation for Rare Diseases is offering a new scholarship for students from the amyotrophic lateral sclerosis (ALS) community in the U.S. who are planning to enroll full time in an undergraduate program for the upcoming academic year. The Paula Kovarick Segalman Family Scholarship for ALS…
A few weeks ago, I visited the Paavola Wetlands Nature Area a few minutes from my home. A local group that meets monthly for prayer and reflection was at the preserve, and since they were in the neighborhood, I decided to stop by. I’d be able to get back quickly…
Nancy Muirhead is a clinical psychologist. Born and raised in Los Angeles, she and her husband moved to Washington state to be closer to her adult children and grandchildren while continuing to work remotely. In August 2024, she was diagnosed with nonfamilial bulbar-onset ALS. She is now focused on…
For the first few years after I was diagnosed with ALS, I followed a daily routine of walking laps in the shallow end of our neighborhood outdoor pool. I soon became friends with a group of women who used the pool at the same time as me. I’ll always…