The Boomerang Effect of Raising Awareness

A 1992 episode of the hit television series “Seinfeld” is a “life-imitating-art” story titled “The Pitch.” The character of George Costanza (with brief help from Jerry Seinfeld) attempts to explain the concept for a new show to fictional NBC executive Russell Dalrymple: George: I think I can sum…

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…

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…

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…