When ALS first caused my husband, Todd, to need a wheelchair, he realized he couldn’t recline too far in it or he’d get stuck there; his arms were too weak to reach the joystick or seat-control buttons. To compensate, his durable medical equipment technician added an egg switch to…
As we try out new wheelchair technology, I have much to learn
The Barrow Neurological Institute has received $16.7 million from the National Institutes of Health (NIH) to help coordinate a nationwide repository of clinical data of people with amyotrophic lateral sclerosis (ALS). The Access for All in ALS (ALL ALS) Consortium will serve as a repository of biological samples and clinical…
PrimeC, NeuroSense Therapeutics‘ investigational, fixed-dose combination therapy for amyotrophic lateral sclerosis (ALS), significantly boosted the survival of patient-derived motor neurons to levels similar to healthy controls in a lab study. The independent study was led by Justin Ichida, PhD, a professor of stem cell biology and regenerative…
Amyotrophic lateral sclerosis (ALS) patients not eligible to participate in clinical trials of pridopidine — a small molecule developed by Prilenia Therapeutics to slow disease progression in ALS — will soon be able to receive the experimental therapy via an expanded access program (EAP). EAPs, also known…
Cytokinetics is calling for proposals from patient advocacy organizations focused on amyotrophic lateral sclerosis (ALS) and cardiovascular conditions for its 6th annual Communications Grant Program. The 2024 program will award five grants totaling $20,000 each to groups serving the ALS, heart failure, and hypertrophic cardiomyopathy communities. These…
I have a vivid and beautiful memory from a few summers ago, as my late husband, Jeff, and I lived with his ALS. We were spending a day on the water, as we often did. Jeff had lost his voice and most of his ability to walk,…
Remember “MacGyver“? In this TV series from the 1980s and early ’90s, the titular secret agent always found himself in an untenable predicament and used whatever was around him to devise a solution. Whether it was a paper clip, a thumbtack, or a toothpick, MacGyver was able to…
Spinogenix has won a nearly $1 million grant from the U.S. Department of Defense (DoD) to move ahead with clinical testing of SPG302, a small molecule candidate for amyotrophic lateral sclerosis (ALS). This is DoD’s Congressionally Directed Medical Research Programs’ second grant to the company, following a…
A few weeks ago, I was catching up with a friend of mine. Among other topics, we discussed what I might do for work after my husband, Todd, is gone. He has ALS, is paralyzed, and needs noninvasive ventilation. His lung function is quite poor, and I could…
Direct measures of muscle strength were correlated with functional abilities among amyotrophic lateral sclerosis (ALS) patients in a Phase 2 clinical trial. Measures of arm and hand muscle strength aligned well with functional domains related to fine motor skills (e.g., handwriting, grasping), whereas leg and foot strength were related…
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