Cold Cash: What to Do When Unexpected Money Pours In
July 24, 2019 12:10 PM   Subscribe

 
Thanks for the post. I'm on the board of ALS BC and also involved nationally - the experience in Canada was similar to that described here.

One critical comment I would add is the wording of "a disease that affects no more than 15,000 Americans" is unfortunately careless. The 15,000 figure is the approximate number of living Americans who have the disease. 5,000 are diagnosed annually - the 15,000 figure would be higher if the patients lived longer. And of course many more people are affected than the patients.
posted by bowline at 12:41 PM on July 24, 2019 [56 favorites]


I was under the impression that this was just a useless internet fad to bring “awareness.” I guess I was wrong
posted by wheelieman at 1:37 PM on July 24, 2019 [2 favorites]


The ALS Association suddenly had $115 million in hand from the Ice Bucket Challenge, a grassroots effort that encouraged people to either dump icy water on their heads or give money. The sum was nearly twice as much as the charity raised in a typical year.
Yeah, that's what I remember. Every person choosing the ice bucket was explicitly rejecting giving a donation. But then it became donating and also the bucket? It was kind of confusing what was going on.
posted by Sangermaine at 1:45 PM on July 24, 2019 [4 favorites]


I always assumed it was a “donate x-dollars and I’ll do the bucket” deal.
posted by Thorzdad at 2:31 PM on July 24, 2019 [1 favorite]


What was that story a few years ago where someone died and gave a small poetry magazine like $300 million?
posted by Chrysostom at 3:14 PM on July 24, 2019


Apparently, it was do the challenge and donate $10, or not do it and donate $100, but many did the challenge and also donated $100.
posted by linux at 4:47 PM on July 24, 2019 [1 favorite]


15,000 seems quite small, given that I know two people with ALS ... but then I remember the math bowline alludes to and it’s I knew two people, past-tense.
posted by aramaic at 5:38 PM on July 24, 2019 [2 favorites]


My naive understanding was that the ice bucket challenge ended up raising enough money that they could find a cure for ALS. It's not quite that rosy, yet, but it definitely was a damn sight more effective than, say, Kony 2012.
posted by Merus at 9:23 PM on July 24, 2019 [1 favorite]


The association does not expect to repeat the magic of the Ice Bucket Challenge. "To plan on that is not, in my estimation, what our community deserves." said Zeff. "They deserve for us to be around serving our mission for years to come, until we work ourselves out of a job, and treatments and cures are found."

This sounds very decent.
posted by mandolin conspiracy at 9:59 PM on July 24, 2019 [5 favorites]


I didn't enjoy being called out and facebook-shamed by a friend to do this fad, but it's nice what they've done with the donations.
posted by Fleebnork at 5:54 AM on July 25, 2019


I didn't get to meet my Mom's mom because she died from ALS before I was born. Her death, which was both slow and sudden, had a profound impact on my mom. As she approached the same age where her mother's symptoms had appeared, she confessed to me that she was worried it would happen to her too. I'm so glad that the money put toward research found more genes so that hopefully they can create better treatments!
posted by Mouse Army at 6:49 AM on July 25, 2019 [2 favorites]


What was that story a few years ago where someone died and gave a small poetry magazine like $300 million?

That would be Ruth Lilly's bequest to Poetry.
posted by DevilsAdvocate at 11:49 AM on July 25, 2019 [1 favorite]


I didn't enjoy being called out and facebook-shamed by a friend to do this fad, but it's nice what they've done with the donations.
You forgot the sneer quotes around “friend.” If they were so concerned, they could have donated $200 and not embarrassed an acquaintance. But it is nice to know something useful happened. I too assumed it was just a bunch of iHoles acting like iHoles.
posted by Gilgamesh's Chauffeur at 6:42 PM on July 27, 2019


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