Commentary

'Ice Bucket Challenge' Funded Research Breakthrough

Many pundits have dismissed social media’s impact on social causes as superficial and basically meaningless, and skeptics even coined a new word, “slacktivism,” to describe the phenomenon of people voicing support for a worthy cause on social media with no follow-through. But the fact is well-conceived and executed social media movements can make a real difference, as demonstrated by 2014’s “Ice Bucket Challenge,” which funded a scientific breakthrough in the understanding of amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease.

A rather silly exercise on its surface, with Facebook users challenging each other to pour buckets of ice water on their heads along with pledges to donate money to the fight against ALS, the Ice Bucket Challenge went viral thanks to participation by celebrities and public figures including Ellen DeGeneres, Bill Gates, Benedict Cumberbatch and Anna Wintour – combined, of course, with the basic appeal of seeing someone give themselves a nice cold dunking, with all its spluttering aftermath.

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Less silly is the amount of money it raised for the ALS Association – $115 million – which subsequently funded research that discovered one of the genes that causes ALS. $1 million from the Ice Bucket Challenge went to Project MinE, a University of Massachusetts research team which discovered a gene, NEK1, associated with 3% of ALS cases, making it one of the most common genetic causes of the disease.

The discovery of NEK1 opens the door to development of new, possibly more effective ALS drug therapies, and comes on top of two other genes associated with ALS that were also discovered by research funded by the ALS Association with money raised from the Ice Bucket Challenge.

Needless to say, people will still find reasons to criticize the Ice Bucket Challenge, and some of this skepticism is probably valid: for one thing, what about all the myriad other diseases out there? Is its viral success a one-off, or can social media-savvy activists conceive similar campaigns for other illnesses? But whatever else happens, if this one campaign furthers the treatment of one deadly and debilitating disease, that’s reason enough to celebrate social media activism by itself.

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