Ice Bucket Challenge Funds 'ALS Breakthrough'
Gene tied to the disease has been identified
By Jenn Gidman,  Newser Staff
Posted Jul 27, 2016 10:29 AM CDT
In this Aug. 7, 2014, file photo, two women get doused during an Ice Bucket Challenge to raise funds and awareness for ALS.   (AP Photo/Elise Amendola, File)

(Newser) – The $115 million raised from 2014's Ice Bucket Challenge for the ALS Association's research and services helped fund what's now being called an "ALS breakthrough," per the Guardian: the ID of a gene linked to the disease, also known as Lou Gehrig's disease, which researchers say could lead to better treatment. A study published in Nature Genetics notes the NEK1 gene is tied to 3% of ALS cases, which scientists note is a "significant" association, existing in both inherited and sporadic (arising despite a lack of family history) cases of the eventually fatal neuromuscular illness. "It's very exciting because it shows everyone who contributed to the Ice Bucket Challenge that their donation had an impact on the research," an ALSA exec tells the Guardian.

The NEK1 gene was found by examining more than 1,000 ALS families, then boosted through further analysis of more than 13,000 subjects with sporadic ALS, notes Genetic Engineering & Biotechnology News. The initiative that pinpointed the gene, Project MinE, was partly funded by $1 million from the Ice Bucket Challenge, per the New York Daily News. The project has a lofty goal of sequencing the DNA of 15,000 ALS patients and 7,500 control subjects, hopefully providing enough specimens to compare to bring researchers closer to finding a cure. "The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available," says Lucie Bruijn, the ALSA's chief scientist, per GEBN. "The ALS Ice Bucket Challenge enabled [the ALSA] to invest in Project MinE's work to create large biorepositories of ALS biosamples ... designed to allow exactly this kind of research." (The Ice Bucket Challenge raised a moral issue.)