Shortly after my doctor told me I had ALS, I faced the daunting task of sharing the news with friends and family members. I hemmed, hawed, and hesitated for many reasons, but my biggest challenge was confronting the reality of my diagnosis. I knew that when I told others…
The enzyme superoxide dismutase 1 (SOD1) forms clumps inside the cells of some people with sporadic amyotrophic lateral sclerosis (ALS), making them more vulnerable to DNA damage — which may contribute to the neurodegeneration that marks the disease, an early study suggests. In other patients, SOD1 is transported…
Citing research progress and other efforts, the late-stage biopharmaceutical company Cytokinetics has reaffirmed its burgeoning partnership with the ALS Association in its fight against amyotrophic lateral sclerosis (ALS). For starters, the company is renewing its sponsorship of the association’s national Walk to Defeat ALS fundraisers, as well…
Using a smartphone to collect amyotrophic lateral sclerosis (ALS) patients’ self-reported scores in the ALS-specific functional rating scale revised (ALSFRS-R) is feasible and shows a high correlation to scores collected at clinical sites, a small pilot study shows. The study “Design and results of a smartphone-based digital…
Histamine-related genes are promising disease biomarkers and therapeutic targets to slow amyotrophic lateral sclerosis (ALS) progression, a mouse study suggests. The study, “Histaminergic transmission slows progression of amyotrophic lateral sclerosis,” was published in the Journal of Cachexia, Sarcopenia and Muscle. ALS is a progressive neurodegenerative disorder…
The sun is setting on another ALS Awareness Month. If we’ve been successful at drawing attention to the disease, we’ve reminded those who are untouched by its tortuous path that ALS is an indiscriminate, relentless, amoral, sadistic, Machiavellian monster. But to what end? Pity is superfluous and attention-fleeting; empathy…
Use of statins, the blood cholesterol-lowering medications, for more than a year was linked to a lower risk of developing amyotrophic lateral sclerosis (ALS) among older adults, a large Medicare beneficiaries-based study suggests. The study “Relationship of statins and other cholesterol- lowering medications and risk of amyotrophic lateral…
Although each patient faces a different journey with ALS, we all share the memory of the moment when we received our diagnosis. When I was told I had ALS, I expected to be assured not to worry and that I’d be back to normal life in no time. Rather…
More than 800 community members recently turned out for the inaugural Arrest and Extinguish ALS event in Lenox, Massachusetts, raising $50,000 for amyotrophic lateral sclerosis (ALS) research. Twenty-two first-responder teams from the state’s Berkshires region gathered at the music venue Tanglewood to participate in a fun tug-of-war event…
RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of…
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