It was two summers ago that our Facebook feeds were full of videos of friends and family dumping buckets of ice-cold water over their heads to raise money and awareness for ALS—Amyotrophic Lateral Sclerosis—also known as Lou Gehrig's disease. Now we can officially say that the social media stunt has made a real-world difference.
The ALS Association announced this week that scientists have discovered a new ALS gene, NEK1, that's one of the most common genes linked to the neurodegenerative disease, and a potential new target for treatment. This breakthrough research, published in the journal Nature Genetics, is part of Project MinE, which aims to sequence the genomes of 15,000 people with ALS—an international effort that recieved $1 million in #IceBucketChallenge donations.
“The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available,” said ALS Association chief scientist Lucie Bruijn, PhD, in a press release. “The ALS Ice Bucket Challenge enabled The ALS Association to invest in Project MinE’s work to create large biorepositories of ALS biosamples that are designed to allow exactly this kind of research and to produce exactly this kind of result.”
As the Ice Bucket Challenge began to sweep across the nation in 2014, it was criticized as a classic example of "slacktivism," or activism that requires little actual effort (like signing an online petition, for example, or championing a cause in your Facebook status).
But in just eight weeks, donations to the ALS Association climbed to $115 million and generated worldwide awareness and support for people affected by the debilitating disease. Since that summer, researchers from all over the globe have identified several ALS genes thanks to funding from the ALS Association that resulted from the viral challenge.
John Landers, PhD, one of the lead researchers on the new study called the discovery of NEK1 "a prime example of the success that can come from the combined efforts of so many people, all dedicated to finding the causes of ALS."
This August, the ALS Association is launching a new campaign to generate funds and awareness. Visit the site to learn more about Every Drop Adds Up.