The video that started it all. (YouTube)
Exactly 365 days ago, Chris Kennedy posted a video to YouTube—one that’s widely regarded to be the first ALS Ice Bucket Challenge video. From there, more than 17 million people followed suit, and 2.5 million people handed the ALS Association $115 million between July 29 and Sept. 15, per the Wall Street Journal, an amount the association says could be the biggest single giving event unrelated to a disaster or emergency.
So how much has been used and what will happen to the rest? Some $47.1 million has thus far been spent or budgeted, but all of the money has been generally earmarked. All spending and grants to date can be viewed here, but it’s a pretty scientific read. (For instance, $2.5 million is going to a University of Massachusetts researcher for the “Development of AAV-Mediated SOD1 Gene Silencing Therapy in ALS.”)
To frame things in layman’s terms: The largest chunk—67%, or $77 million—will go to research geared toward identifying treatments or a cure. The muscle-wasting disease tends to kill patients within 5 years of diagnosis, and there’s currently only one life-extending drug on the market, CNN reports.
(Photo: Getty Images)
The second biggest amount, $23 million, will go to “patient and community services” to help those living with the disease. One example: the restocking and expansion of equipment loan closets with items like Hoyer lifts and transport wheelchairs.
The remaining $15 million will go to education ($10 million), fundraising ($3 million), and processing fees “for credit card transactions and web overage charges due to increased volume of daily web visitors during the 2014 ALS Ice Bucket Challenge."
The "2014” in the previous sentence is somewhat noteworthy: The association would like there to be a 2015, 2016, and so on. The Chronicle of Philanthropy reported earlier this month that the association intends to relaunch the challenge in August. As the publication puts it, “Their rallying cry: Every August until a cure.” It references the mustache-growing/prostate cancer effort Movember, which happens each November, as a sort of model.
More on the Ice Bucket Challenge, which didn’t end so well for everyone, here.
By Kate Seamons
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This article originally appeared on Newser: What’s Happened Since the Ice Bucket Challenge Was Born