The Widely-Criticized ALS Ice Bucket Challenge Funded Discovery of Significant Gene

Man dumping icebucket from a ladder onto another man

Two years ago, our Instagram and Facebook feeds were dominated by our coworkers, weird uncles, and old friends posting videos of full buckets of icey water being dumped on their heads. You may have thought the challenge was silly, but the money raised from the ALS Ice Bucket Challenge, a global social media campaign, just helped fund the discovery of a significant gene, NEK1. This is one of the most common genes that contributes to the disease, and is associated with 3% of ALS cases.


The Ice Bucket Challenge wasn’t your average social media trend, however. It aimed to spread awareness of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, which affects the function of nerves and muscles. Many people had never even heard of the disease before the Challenge.


The premise was simple: if your friend “nominated” you via Facebook or Instagram video, you either had to donate to the ALS Association or post a video of yourself getting the frigid water dumped on your head. Many people did both.


More than 2.4 million tagged videos circulated on Facebook, and the efforts raised $115 million for the ALS Association.


Here’s a breakdown of where the funds from the Ice Bucket Challenge went:

  • $77 million (67%) to Research

  • $23 million (20%) to Patient and Community Services

  • $23 million (9%) to Public and Professional Education

  • $3 million (2%) to Fundraising

  • $2 million (about 2%) to External Processing Fees


Project MinE, a research initiative devoted to finding information linked to ALS, is credited with discovering the gene.


People mocked the Challenge when it gained traction, calling it “slacktivism,” the notion of attempting to feel good about helping out without actually doing anything meaningful. Many criticized the Ice Bucket Challenge for being a waste of water, and believed that monetary contributions could better go toward a larger, less niche cause.


And yet, this breakthrough shows that even when our philanthropic efforts are criticized, some good can come out of it. Whether you got ice dumped on your head, donated to the ALS foundation, or watched it all go by and spread awareness via word of mouth, these contribution efforts paid off.


Maybe sometimes “slacktivism” is effective after all.


Photo credit: Wikipedia Creative Commons


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