Ever since I was diagnosed with ALS in 2010, I’ve become sensitive to how ALS is represented in the movies. And I’ll admit to voicing my opinion about the topic in several of my past columns. So you can imagine my glee and pride when, six months…
“What’s the buzz? Tell me what’s a-happening, Why should you want to know? Don’t you mind about the future? Don’t you try to think ahead? Save tomorrow for tomorrow, Think about today instead.” — Andrew Lloyd Webber and Tim Rice, “What’s the Buzz,” from the rock opera “Jesus Christ…
Did you know that May has been ALS Awareness Month for the past 30 years? Yes, that’s right, 30 years. Some probably think ALS awareness activities began in 2014 with the ice bucket challenge. At least that’s when many first pronounced the letters A-L-S before dumping a bucket of water…
Everyone likes being noticed — for the right things, of course. I like it when others recognize my unique talents and skills or a job well done. I don’t like being noticed because I have to use a rollator to help me walk. Or, because I move more slowly than…
Where were you on Feb. 28? Did you know that it was Rare Disease Day? Don’t feel bad if you missed it because I did too. But I shouldn’t have. Because Rare Disease Day, along with the international events around it, represented a major change in perspective toward finding…
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…
I have exciting news to share with you about a community addition to this site! The ALS News Today Forums, which launched today, is a space designed to give readers an easier way to connect , share comments, and ask questions related to ALS. It is…
Are you ready? Then let’s GO! We can climb a mountain, walk a mile, drink a beer, or just shop online — all to raise money for ALS. In the U.S., the month of May traditionally has been designated as ALS Awareness Month. In the U.K., where…
This WKBW TV video is about Marcia from North Tonawanda. Marcia was diagnosed with amyotrophic lateral sclerosis (ALS) two years ago. MORE: Seven hundred sites enrolled in new infusion center directory for ALS patients prescribed Radicava Marcia’s family held a “Music for Marcia” fundraising event featuring local musicians…
This video from Alisa Apreleva is all about an awareness campaign in Moscow, Russia, that’s helping to highlight amyotrophic lateral sclerosis (ALS). MORE: What research is being done on ALS? The video features Russian recording artists and patients in various stages of the disease singing a specially written and composed…
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