Elsewhere online
July 28, 2016

‘Ice Bucket Challenge’ Credited for Major ALS Discovery

Money raised through the “ice-bucket challenge” that swept the internet two years ago contributed to the identification of a gene that scientists have linked to diagnoses of amyotrophic lateral sclerosis, the neurological disease at the center of the fundraising campaign, The New York Times and The Christian Science Monitor report.

Project MinE, a global collaboration to sequence the genes of thousands of ALS patients, announced the discovery of NEK1 in a paper published Monday in the journal Nature Genetics. The ALS Association — which took in $115 million via the summer 2014 video sensation that saw supporters solicit donations online while dousing themselves with ice water — invested $1 million of the proceeds to bring the project to the United States.

Researchers say NEK1 is one of the most common genes associated with ALS, showing up in 3 percent of patients. The ALS Association earmarked $77 million from the ice-bucket donations for research on the disease. The viral fundraiser, derided by some at the time as the height of online “slacktivism,” has brought “new energy and excitement in the ALS research phase that hasn’t been there before,” said Brian Frederick, the association’s executive vice president for communications and development.