When Pete Frates challenged his friends to dump a bucket of ice water on their heads in a video, he hoped to turn a Facebook trend into a fundraiser for ALS, or Lou Gehrig’s disease. Two years, 17 million empty buckets, and $115 million later, researchers have identified a gene they believe to be responsible for the diagnosis Mr. Frates received.
Project MinE, a global collaboration to sequence the genomes of at least 15,000 people diagnosed with ALS, has identified the gene NEK1, researchers announced in a paper published in Nature Genetics on Monday. Because of the Ice Bucket Challenge, the ALS Association was able to bring Project MinE to the United States, it said in a statement.
The Ice Bucket Challenge's success in raising millions of dollars, and its contribution to the pivotal discovery, not only shows how a charity can hit the jackpot through a social media campaign, but it also shows how even those who don’t contribute can provide energy to it, countering criticism the challenge was just Internet “slacktivism” that required almost no effort.
“There’s new energy and excitement in the ALS research phase that hasn’t been there before,” says Brian Frederick, the ALS Association’s executive vice president of communications and development, in a phone interview with The Christian Science Monitor Tuesday. “The needle is moving. Now, thanks to the Ice Bucket Challenge, it’s moving much quicker.”
It all started with Frates. He challenged friends, who challenged more friends, who, eventually, challenged millions of more friends. The nomination process was simple: dump a bucket of ice water on your head within 24 hours, or donate $100 to research (many did both). Participants posted a video on Facebook, Instagram, or Twitter. Even celebrities like Stephen Curry, Bill Gates, and former President George W. Bush got wet.
The ALS Association has committed $77 million of the $115 million it brought in to research, including Project MinE. The international effort is the largest familial study of the disease, and was led by the University of Massachusetts Medical School in Worcester and the University Medical Center Utrecht in the Netherlands.
In an interview with the Monitor, Dr. Frederick and Calaneet Balas, the ALS Association’s executive vice president of strategy, says the Ice Bucket Challenge allowed the nonprofit to contribute to research efforts they were previously approached by, but weren’t in a position to contribute to. Moreover, they said, the phenomenon energized research efforts about ALS.
The team behind an earlier study, led by John Hopkins professor Philip Wong, also attested to this last year. Dr. Wong's team had been studying ALS for a decade. But the funds the challenge brought to the field propelled them to pursue riskier yet potentially more rewarding experiments.
The challenge wasn't without its critics, however. Participants were criticized for not emphasizing that the challenge was about ALS, for example. Jacob Davidson, a news editor at Time Magazine whose father died of the disease, described feeling uneasy when he researched the challenge.
“Everyone you’ve ever seen dump water on themselves, per the rules, is not asked to donate. They may choose to, but the viral nature of this fad appears centered around an aversion to giving money,” wrote Mr. Davidson in August 2014. “The Challenge even seems to be suggesting that being cold, wet, and uncomfortable is preferable to fighting ALS.”
Davidson was generally supportive of the challenge, because it spread awareness about the disease, but said future campaign should try emphasize donating.
“In an age where hashtag activism and information-free awareness campaigns are becoming more and more common, we should be very conscious of how to make viral trends as useful as possible,” he wrote.
Dan Pallota, a nonprofit expert known for his involvement in multi-day charity events for breast cancer, AIDS, and suicide prevention awareness, was critical of how Americans have not increased their giving to charitable organizations since numbers were first tracked in the 1970s. Charitable giving has remained at 2 percent of the country’s GDP, he wrote in the Harvard Business Review. (Inflation-adjusted wages for most workers have remained largely flat since the 70s, too.)
Millennials give in even smaller amounts — $5 or $10 — to different campaigns, rather than a larger sum every year to one organization, according to Stacy Palmer, editor of The Chronicle of Philanthropy.
"They’re really feeling like, in this moment, this campaign asked for my support... It doesn’t matter to me if it’s a nonprofit, a political organization, a community group," Ms. Palmer told PBS Newshour. "I want to give $10, and I also want to feel like my $10 was important, it was noticed by them, and it made a difference."
But she and Amy Sample Ward, chief executive of the Nonprofit Technology Network, said the Ice Bucket Challenge showed nonprofits can take advantage of these young donors' tendencies. The important thing is finding something that’s fun and sharable.
"It’s about the people participating," said Ms. Ward. "It’s not about the organization."