Ice Bucket Challenge Funds Research Breakthrough With Gene Discovery, ALS Association Says

The ALS Ice Bucket Challenge that took the internet by storm in 2014 to raise awareness about amyotrophic lateral sclerosis (ALS) has funded an important research breakthrough, the ALS Association announced Monday.

The disease, also called Lou Gehrig’s disease, is a progressive neurodegenerative disease that causes nerve cells in the brain and spinal cord to deteriorate. Within two to five years of diagnosis, the patient is unable to move and talk, finally losing their ability to breathe, leading to death.

Social media saw a massive fundraising push where 17 million people reportedly posted videos of themselves dumping a bucketful of ice water on their heads. The challenge was taken by a number of celebrities—from Bill Gates, Mark Zuckerberg and former U.S. President George W. Bush to Steph Curry and Ronda Rousey— who got soaked to raise awareness for the disease. President Barack Obama did not take part in the challenge but donated an undisclosed amount to the cause.

With the $115m that the Ice Bucket Challenge raised, the ALS Association was able to fund a research by Project MinE— the largest-ever study of inherited ALS.

The study, published in Nature Genetics, says that scientists have identified a new gene contributing to the disease, NEK1. The scientists can now develop a gene therapy to treat it.

“The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available,” Lucie Bruijn of the ALS Association said in a statement. “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.”

NEK1 is the third ALS-related gene researchers have discovered using money from the Ice Bucket Challenge, according to the organization. The project that found the gene is led by someone who has ALS, making the discovery unique.

Even though only 10 percent of ALS patients suffer from the inherited form of the disease, genetics are believed to have contributed to a much larger percentage of cases. More than 80 researchers across 11 countries were involved in the study.