Ice Bucket Challenge Funds Help Researchers Find ALS Breakthrough

BEVERLY, MA — While some may have viewed the Ice Bucket Challenge as a fad, it seems the funds it generated has led to significant scientific breakthroughs.

Researchers from Project MinE announced Monday that they have identified a gene — NEK1 — that is linked to Amyotrophic Lateral Sclerosis, more commonly known as ALS. The ALS association donated $1 million in Ice Bucket Challenge funds to Project MinE to spur the US arm of the project.

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

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The gene discovered is related to familial ALS, which accounts for only 10 percent of cases. According to a report by Rare Disease Report, researchers noted a significant association between loss-of-function NEK1 variants and risk of familial ALS.

"The discovery of NEK1's role in the disease will provide an important new target for therapy development," the release read.

The ALS Association noted in the release that the study was headed by John Landers, of the University of Massachusetts Medical School in Worcester, and Jan Veldink, of University Medical Center Utrecht (Netherlands).

“Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery,” Landers said in the release. “It is a prime example of the success that can come from the combined efforts of so many people, all dedicated to finding the causes of ALS. This kind of collaborative study is, more and more, where the field is headed.”