It may feel like ages ago, but some social media users may remember not too fondly the videos of people emptying buckets of ice on friends. It was the Ice Bucket Challenge. It went viral. The clips were all over the place on YouTube, Facebook and other online platforms. Very few understood what all the fuss was about. Like so many other things, it was supposed to support a worthy cause. But unlike other calls for aid, this one worked. The Ice Bucket Challenge was supposed to help find a cure for a rare genetic condition, amyotrophic lateral sclerosis. It is most commonly known as Lou Gehrig’s disease. The Ice Bucket Challenge campaign was started by the ALS Association, a charity. In six weeks, the seventeen million YouTube videos yielded a staggering $115 million, $21.7 million of which the charity allocated to research programs. Two years later, the first breakthrough came. One of the beneficiaries of the funding, Project MinE, sequenced the DNA of 15,000 ALS patients. Project MinE researchers pinpointed a gene called NEK1 as key. It has a vital role in DNA repair. If gene NEK1 stops working, it may lead to neuronal degradation that can cause ALS.
At the time, critics had bemoaned this type of collective campaigns in support of worthy causes as the sort of “feel-good,” lazy activism best labeled as “passivism.” Have a bucket of ice thrown on you, post it on social media, and fight disease, poverty, and a thousand other ills. This success has proved critics wrong. The disease is named after Lou Gehrig, a baseball legend. In July 1939, he gave a farewell speech to his fans at New York’s Yankees’ stadium. The condition was putting him out of the game. Fighting back tears, he called himself “the luckiest man on the face of the earth,” for his family and the talent he had been blessed with to enjoy his passion. May his words serve as an inspiration for those who may be luckier than him in this race to find a cure.