$100m donations in Ice Bucket Challenge has allowed researchers to discover a new gene linked to ALS
Two summers ago, when video clips of topless men and screaming women pouring buckets of ice water over them filled the internet, people thought it was silly.
The idea was to raise money for Amyoptrophic Lateral Sclerosis (ALS) - a rare, progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, eventually leading to the loss of muscle control. Within two to five years of diagnosis, patients lose their ability to breathe, leading to their death.
Now, the Internet Ice Bucket Challenge that encouraged millions of people to dump buckets of ice-cold water over their heads has managed to collect enough funds to make an important breakthrough in ALS research.
The huge, socially-driven fund raising push saw 17 million people posting videos online and a slew of celebrities from Bill Gates to Steph Curry getting soaked to raise awareness for ALS, also called Lou Gehrig's disease.
In just eight weeks, $115 million was donated to the ALS Association, 67% of which was dedicated to advancing research for treatments and a cure, the non-profit reports.
Recently, the University Of Massachusetts Medical School's Project MinE discovered the gene that is responsible for ALS. Project MinE scientists were able to research this gene with help from the ALS Association, which donated $1 million from the Ice Bucket Challenge.
The identified gene is NEK1, which its alternative could provide clues to understanding and potentially treating familiar and sporadic ALS.
"The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available," said Dr. Lucie Bruijin, Chief Scientist at the ALS Association. "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."
The association says that this is the third ALS-related gene researchers have discovered using money from the Ice Bucket Challenge. “The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world," Bernard Muller, founder of Project MinE and ALS patient, said in a statement. "This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS."
Next month, the ALS Association is launching a new campaign, Every Drop Adds Up, in an effort to recreate the success of the Ice Bucket Challenge.
ALS affects four to eight per 100,000 people and approximately 5,000 are diagnosed each year in the U.S.