Any call to action that requires the use of Facebook (“Have a heart, like this photo of a starving African child!”) is automatically lumped together in the same category as chain letters and email scams targeted to gullible grandmothers.
And the severely popular 2014 Ice Bucket Challenge, a fun activity meant to promote awareness on the progressive neurodegenerative disease called ALS, was no exception.
ALS attacks the body’s nerve cells responsible for controlling voluntary muscles. There is currently no cure for this disease.
Several important people rose to the challenge, including George W. Bush, Mark Zuckerberg, and Bill Gates, who then nominated a slew of other big names.
https://www.youtube.com/watch?v=XS6ysDFTbLU
Despite its huge, internet-breaking online success, the challenge was dubbed your regular “slacktivism” campaign. The ALS Ice Bucket Challenge was mercilessly criticized by reputable publications and news programs.
TIME called the crowdfunding campaign “problematic in almost every way”.
The news magazine even went so far as to say that, “most of its participants … didn’t mention the disease at all. The chance to jump on the latest trend was an end in itself. In fact, the challenge’s structure seems almost inherently offensive to those touched by ALS.”
But the proof of the pudding is in the eating: according to the ALS Association, the charitable initiative has successfully funded an important scientific gene discovery.
It may have left everyone from Justin Bieber to Anna Wintour to millions of other participants all over the world cold and dripping wet, but not for nothing.
Scientists have identified a new gene contributing to the disease, NEK1.
Research by Project MinE, published in Nature Genetics, is the largest-ever study of inherited ALS, also known as motor neuron disease (MND). “The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available,” said Lucie Bruijn of the ALS Association.
The identification of gene NEK1 means scientists can now develop a gene therapy treating it.
This is great news for the more than 5,000 people diagnosed with ALS each year in the U.S alone. And over in the UK, this disease also physically crippled one of the world’s greatest minds, Stephen Hawking.
But unlike Hawking, Most sufferers die within 2 to 5 years of diagnosis. “The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world,” said Bernard Muller, founder of Project MinE. Muller himself is an ALS patient. “This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS.”
For the longest time, The Ice Bucket Challenge was lauded as a stunt. But two years later, it has funded six research projects, and raised $115m (£87.7m).
Yes, all this from people pouring cold water over themselves and posting the footage on social media.