Yay, it’s October! Fall colors, pumpkin pie, Halloween, and my birthday month. Not only am I feeling “another year older, another year wiser,” I’m also grateful and appreciative that I’ve had 72 birthdays, even though I’m living with ALS. But reaching this particular milestone has me pondering the complicated…
Understanding and accepting the process of aging and living with ALS
The National Institutes of Health (NIH) has awarded about $45.1 million toward an expanded access program (EAP) of CNM-Au8, an oral therapy candidate for amyotrophic lateral sclerosis (ALS). The EAP, commonly referred to as compassionate use, will make CNM-Au8 available to U.S. patients who aren’t eligible for clinical…
An advisory committee of the European Medicines Agency has maintained its recommendation not to approve AMX0035 for amyotrophic lateral sclerosis (ALS). In its initial assessment issued in June, the Committee for Medicinal Products for Human Use (CHMP) said data from the CENTAUR Phase 2 trial (NCT03127514), which formed…
One of our greatest sources of joy and normalcy when my late husband, Jeff, was living with ALS was getting out and about in the community. The more ALS seemed intent on changing our life, the more determined Jeff became to find ways around it. I was his…
People with amyotrophic lateral sclerosis (ALS) due to mutations in the FUS gene may benefit from interferon-gamma treatment to delay disease onset and/or progression, an early preclinical study suggests. Researchers found that an immune signaling protein called interferon (INF)-gamma protected patient-derived motor neurons from oxidative stress. INF-gamma also restored…
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…
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…
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- Early-career ALS scientist wins first MDA Research Momentum Award
- Early PrimeC treatment extends ALS survival by 14 months: Long-term data
- Actor Eric Dane honored for bringing visibility and hope to the ALS fight