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…
Reframing Our Approach with a New Kind of ALS Diagnosis
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…
Injection of human neural stem cells into the spinal cord of people with amyotrophic lateral sclerosis (ALS) was found safe and did not cause adverse effects even two years after the transplant, results from a Phase 1 clinical trial show. Trial findings were published in the study, “Results…
“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, “…
Columns
Working Around My Workarounds
Living with ALS certainly has its challenges, which lead many of us to rely on workarounds. These are creative, temporary solutions that solve an everyday problem; I first wrote about mine in “The ALS Workaround Dilemma.” But the key word here is “temporary,” because workarounds run the risk…
People with familial amyotrophic lateral sclerosis (ALS) related to the gene VAPB — known as ALS type 8 — can show subtle cognitive deficits and obvious behavioral changes, which may lead to clinically significant depression and anxiety, a Brazilian study shows. This data supports prior studies…
Using antibiotics may increase the risk of developing amyotrophic lateral sclerosis (ALS), with a higher number of prescriptions linked to greater risk, a nationwide study in Sweden suggests. However, the researchers caution that more studies are needed to prove a direct,…
News
Phase 3 Trial Results of Tirasemtiv Show Potential of Similar Therapies for ALS, Researchers Say
People with amyotrophic lateral sclerosis (ALS) who tolerated higher doses of tirasemtiv showed a trend toward slower decline in breathing muscle activity, although the difference was not statistically significant between those treated with the investigational therapy and those on a placebo, a Phase 3 clinical trial shows. These results may have…
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