Smartphones May Help Remotely Evaluate Key Clinical Data of ALS, Study Suggests

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…

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…

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…

“What one man can do, another can do.” So said actor Anthony Hopkins, playing the role of Charles Morse in the movie “The Edge.” He used that mantra as inspiration to fell a rogue, predatory grizzly bear. It may be hyperbolic to equate the difficulties of securing one’s…

Although people who develop amyotrophic lateral sclerosis (ALS) have altered levels of several blood metabolites — products of our cells’ metabolism — before disease onset, these changes do not enable reliable identification of who is at risk of having ALS, according to a large study. The research, “…