The Ice Bucket Challenge Helped Fund an ALS Research Breakthrough

Marty Walsh takes the Ice Bucket Challenge/Photo by Kyle Clauss

If you doused yourself with ice water back in 2014, it wasn’t all for nought. The ALS Association announced Monday that money raised through the Ice Bucket Challenge helped researchers find a new gene associated with ALS, challenging critics who called the viral campaign nothing more than a social media stunt.

The research, part of Project MinE, was led by John Landers, a professor of neurology at UMass Medical School, and Jan Veldink, a researcher from the Netherlands’ University Medical Center Utrecht. Their genome sequencing project identified a variation in the gene NEK1 that’s present in roughly 3 percent of all ALS patients. That may not seem like a lot, but it makes NEK1 one of the genes most strongly associated with the neurodegenerative disease.

“This study was only possible because of the collaboration of all of the scientists involved,” Landers said in a statement. “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.”

Indeed, the study brought together almost 100 researchers from 11 different countries. They studied 1,000 families with a history of ALS, as well as 13,000 sporadic ALS patients—that is, patients without a family history of the disease. NEK1 was overrepresented in both populations, leading researchers to conjecture that it could be a viable new target for treatment. Next, Landers and Catherine Lutz, a researcher at Bar Harbor’s Jackson Laboratory, will create mouse models to further understand how NEK1 could be used in therapy and drug development.

And if you sat out the Ice Bucket Challenge last time, the ALS Association is giving you a second chance. This August, it’ll launch a new fundraising effort called, appropriately, Every Drop Adds Up.