Living with ALS for the past 14 years has taught me an important lesson on adapting to a new way of life. Before ALS, my life was filled with carefree movement. I spoke with ease and enjoyed endless physical energy. Now, even though my…
The tips and strategies that help me participate in life
Note: This story was updated Jan 24, 2024, to correct that Radicava and Radicava Oral Suspension are available in Switzerland but not in other European countries. FAB122, an oral formulation of edaravone developed by Ferrer, failed to slow disease progression or extend survival in adults with amyotrophic lateral…
To reflect a new era of commitment and determination in the fight against amyotrophic lateral sclerosis (ALS), The ALS Association Greater New York Chapter has become ALS United Greater New York. The rebranding of the New York City-based nonprofit represents a break…
In the wake of ALS loss, certain touchstones bring comfort every time I think of them. This includes small things like funny photographs, private nicknames, and sentimental gifts. In grief, even a favorite old coffee mug can bring immeasurable joy. I have one additional beloved thing, too: a quotation…
The proportion of people diagnosed with familial amyotrophic lateral sclerosis (ALS) among all cases is 8%, according to a pooled analysis of studies published worldwide. Still, data show there was a wide variation of estimates across the studies based partly on geographical differences, study design, the definition of familial…
Once when my daughter, Sara, was a baby, I made a mistake that led to a moment of sheer panic. After setting up her jogger stroller next to the car and strapping her in, I dug through the diaper bag that was still in the vehicle to get some…
CL2020, a stem cell-based therapy that was being developed by the Life Science Institute, part of Mitsubishi Chemical, was found to be safe and tolerated well by five people with amyotrophic lateral sclerosis (ALS) who took part in a Phase 2 clinical study. The investigational therapy, which involved…
An initiative at a University of Illinois campus that aims to improve voice recognition software for people with speech difficulties is recruiting adults in the U.S. and Puerto Rico living with amyotrophic lateral sclerosis (ALS). Known as the Speech Accessibility Project, it is led by the Urbana-Champaign…
ALS has taught me many life lessons, and one of the most important ones is to never give up. Recently, though, I was put to the test by a very sticky strip of Velcro. The episode became a metaphor for how easy it is for us ALS patients to…
Verge Genomics has launched a proof-of-concept trial to test whether VRG50635, its oral PIKfyve inhibitor therapy, can be used as a potential treatment for people with amyotrophic lateral sclerosis (ALS). The Phase 1b study will assess the safety and tolerability of escalating doses of VRG50635 — which works…
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