It turns out, perhaps dumping that ice water over your head a few summers ago did make a big difference.
A recent report from independent research firm RTI International found that donations from the 2014 Ice Bucket Challenge helped the ALS Association increase its annual funding for research worldwide by 187%.
“Five years after the Ice Bucket Challenge soaked the world, the pace of discovery has increased tremendously, bringing ALS researchers closer than they have ever been to real breakthroughs in diagnosing, treating, and eventually curing this disease,” said Calaneet Balas, president and CEO of The ALS Association, in a press release.
The report documents and quantifies the outcomes of spending from the $115 million raised by the ALS Association from the challenge, which peaked in the summer of 2014.
Videos of people from around the world accepting the challenge, and challenging their friends, took the internet by storm, earning tens of millions of views across every social media platform. The challenge has been lauded as one of the most successful social fundraising efforts of all time.
On YouTube, a 90-second clip of
Facebook's top videos from 2014 include challenges by comedian Jeff Foxworthy and his wife, Pamela; actor Benedict Cumberbatch; and the late Stephen Hawking, who died in 2018 of ALS.
While the celebrities' videos accelerated the movement's popularity, the hundreds of millions of dollars of donations came from participants and viewers worldwide.
“Thank you to every single person who took the Challenge five years ago," said Balas. "All of you are stakeholders in the progress we have made and investors in the successes of the future, not just in ALS but in all diseases."
According to the report, the Association’s investment of Ice Bucket Challenge funds had a direct impact on the fight against ALS, including the discovery of five new genes connected to ALS. The Association's clinical network expanded by 50%, while researchers used funding for new clinical trials to test potential treatments.
The report found that the ALS Association committed nearly $90 million around the world in research funding between 2014 and 2018, including $81.2 million across 275 research grants in the United States and an additional $8.5 million internationally.
And while the challenge peaked in popularity in the summer of 2014, supporters of the ALS Association have made the ice bucket challenge an annual thing. "Since the ALS Ice Bucket Challenge soaked the world four years ago, something has become clear: August is for raising awareness and funds to fight ALS!" the ALS Association urges, seeking donations each August.
Social media marketing expert Mark Schaefer said he had fun participating in the challenge -- a key to its virality across social networks.
"That activation was successful because it had celebrity appeal, it was something anyone could do, it was for a worthy cause, and it was authentic, visual, fun, and unique," Schaefer said. "I think the difference with this campaign is that it was tied to giving, not just a gimmick to raise awareness."
The movement has spurned a separate website for the ALS Association, ChallengeALS.org, which describes a number of other challenges that people can accept to keep up the fight: the ALS Youth Challenge, the Pie #InYourFaceALS Challenge, the Walk to Defeat ALS series and more.
But the impact of the 2014 ice bucket challenge's immense virality is unmatched. The report showed that the Association also used Ice Bucket Challenge money to invest in more researchers, expanding the network of scientists working to develop treatments and a cure. From 2014 to 2018, The ALS Association awarded 322 grants to 237 different scientists for ALS research, RTI reported.
“Since the ALS Ice Bucket Challenge, researchers funded by the Association collectively increased their scientific output by 20%, measured by the annual count of published journal articles authored by at least one grantee,” said Sarah Parvanta of RTI. “This number is expected to increase once all published articles from 2018 have been catalogued in bibliographic databases. The number of peer-reviewed articles acknowledging the support of The ALS Association more than doubled since the Challenge.”
“The Ice Bucket Challenge has been transformative in the field of ALS genomics. We built one of the largest resources of ALS whole genome-sequencing data. This resource has been shared with partners all over the world. It has accelerated the pace of ALS gene discovery and has led to the largest ALS sequencing study in the United States” said Hemali Phatnani, director of the Center for Genomics of Neurodegenerative Disease at the New York Genome Center.
The entire 37-page report can be downloaded here.
