It was for a good cause. And it looks like it worked. Also, 7 other things worth knowing today.
It was the best of times, it was the worst of times.
It was a time when people dumped buckets of ice water on their heads, posted video online, and then challenged other people on social media to do the same thing—or else to donate money to research ALS disease, also known as Lou Gehrig’s disease.
It was for a good cause, as they say: ALS is a devastating neurological disorder that causes paralysis and even death, and life expectancy for ALS patients is generally only two to five years from the time of diagnosis.
But seriously, did dumping water on people’s heads do anything for a cure? Well now, eight or 10 years later after the challenge (depending on how you count) we have a happy ending.
Or at least, a happy milestone.
Last month, the FDA approved a new drug for ALS called Relyvrio, made by Amylyx Pharmaceuticals of Cambridge, Mass., which can reportedly extend ALS patients' lives by five to six months, possibly a bit more.
Last week, the ALS Association revealed that research on Relyvrio was funded in part by $2.2 million raised by people participating in the ice bucket challenge.
"Six months can be someone attending their daughter's graduation, a wedding, the birth of a child," Calaneet Balas, president and CEO of the ALS Association, told NPR. "These are really big, monumental things that many people want to make sure that they're around to see and be a part of."
(Pete Frates, an ALS patient who had been a college basketball player and who is largely credited with having spurred the ALS ice bucket challenge, survived seven years with the disease; he passed away in 2019.)
We should acknowledge that Relyvrio carries some controversy. In short, the FDA approved the drug on the basis of a single clinical study involving 137 patients. Typically, the FDA requires at least two studies, and hundreds of patients.
However, proponents like the ALS Association say there simply aren't many treatment options now, and the prognosis for patients with ALS is so poor, that rushing the drug to market doesn't carry a lot of downsides—except perhaps the $158,000 annual estimated treatment cost.
I think this is a good news story for once. People like Frates launched a trend, did a fun/silly thing on social media, raised awareness and money to combat a devastating condition—and it all appears to have resulted in a measurable, positive result.
Well, it's Friday, and I like to encourage people to comment on Fridays, so let's use this as a jumping off point: Did you do the ice bucket challenge back in the day? Can you share a story about another fundraising effort that was similarly successful? And last but not least: Can you think of another good news story to share?
Let us know in the comments. And, have a fantastic weekend.
7 other things worth knowing today
President Biden warned Thursday that the risk of nuclear “Armageddon” is at the highest level since the 1962 Cuban Missile Crisis amid intensifying Russian threats to unleash its nuclear arsenal. Biden said Russian President Vladimir Putin was “not joking when he talks about the use of tactical nuclear weapons or biological or chemical weapons.” (NY Post)
Also on Thursday, Biden pardoned more than 6,500 people convicted of possessing marijuana, saying the current system “makes no sense” and sending pot stocks soaring on the news. The pardons apply only to federal offenders convicted of “simple marijuana possession” as well as those charged in the District of Columbia, but Biden called on governors across the country to follow suit. (CNBC)
The European Commission on Thursday took Malta to court over its "golden passport" scheme that allows wealthy investors to buy Maltese—and therefore EU—citizenship, without having to live in the country. But buying citizenship and residence rights is a global trend among the super-wealthy that looks set to stay. (France24)
You'd hardly know Hurricane Ian passed through Babcock Ranch, a community north of Fort Myers. But it wasn't luck that kept the homes unscathed—it was intentional, innovative design. (NPR)
Two Russians who said they fled the country to avoid compulsory military service have requested asylum in the U.S. after landing in a small boat on a remote Alaska island in the Bering Sea, Alaska U.S. Sen. Lisa Murkowski's office said Thursday. (NPR)
The contemporary art world has had more than its share of young talent, but it’s tough to recall an artist who has generated as much early-career recognition as Andres Valencia, age 10. One of his paintings went for $159,000 at a Phillips de Pury auction in Hong Kong, and another hit $230,000 at a charity gala in Capri, Italy. (Press Democrat)
Scooby Doo's "Velma" is officially a lesbian. Clips from the brand new movie “Trick or Treat Scooby-Doo!,” showing the Mystery Inc. member googly-eyed and speechless when encountering (female) costume designer Coco Diablo, have gone viral on Twitter, confirming suspicions held by the “Scooby” fan base for decades. (Variety)
Thanks for reading. Photo credit: Fair use/video screen capture. See you in the comments!
I'm not a big fan of ice water (other than as a drink) so I donated $100 to ALS research when I was challenged.
If this Ukraine conflict is the greatest challenge since the Cuban Missile crisis I am uncomfortable with a Commander in Chief who calls for dead people in press conferences, tells people he has grown up in a Puerto Rican community that didn’t exist in his beloved Scranton PA and wanders around the room like Artie Jonson from Laugh In having nuclear codes