In summer 2014, you couldn’t open social media without seeing buckets of iced water dumped on your favorite celebrities and friends alike. The challenge encouraged people to raise awareness for Amyotrophic Lateral Sclerosis (ALS) by pledging a donation, dousing themselves with a bucket of freezing water and passing the chilly challenge along.
There was no middle ground when it came to the Ice Bucket Challenge: you either enthusiastically participated or you criticized the fad, noting that many challengers didn’t even mention the cause. So who was right? As of Monday, July 25, 2016, we have a pretty good answer.
More than $115 million was raised in a single month during the Ice Bucket Challenge and was able to fund ALS research worldwide, according to The Guardian. Funded with the proceeds of this viral grassroots campaign, scientists with Project MinE announced they have discovered a gene variant connected to the disease. Project MinE is made up of more than 80 researchers in 11 countries who were brought together thanks to the Ice Bucket Challenge’s far-reaching impact, making it the largest precision medicine program of its kind according to the ALS Association.
While the gene appears in just 3% of those with motor neuron disease, it has led to major advances in understanding the cause of ALS. The gene, NEK1, is thought to be responsible for repairing DNA damage that comes with age, potentially explaining why it develops more commonly in people over the age of 50.
The research team will use this finding to help scientists better understand how ALS develops, then they will work to create groundbreaking treatments for the presently incurable disease.
Dr. John E. Landers of Project MinE suggests that this discovery brings the team closer to finding treatments and cures for ALS, and that “collaboration is key in everything we do.” The discovery was made possible because of the collective effort from challengers and researchers alike, and he urges people to continue funding the project to find the cure as quickly as possible.
In the United States, more than 6,000 people are diagnosed with ALS each year and the average survival time is three years.