Ice Bucket Challenge Funded A Major Breakthrough In ALS Research

The discovery could help scientists develop new therapies.

If you dumped a bucket of ice over your head two years ago, this will give you goosebumps all over again. 

The viral Ice Bucket Challenge helped fund the discovery of a new gene associated with ALS. The identification of the NEK1 gene, by Project MinE, provides scientists with a new potential target for therapy development for the progressive neurodegenerative disease that can rob the body of its ability to speak, eat, move and breathe, according to the ALS Association.

Project MinE’s discovery was made possible thanks to funding from a number of sources, including money that was collected during the ice bucket craze.

The social media phenomenon was key to supporting the initiative because it brought in funding from “new sources in new parts of the world,” Bernard Muller, an ALS patient who helped found Project MinE, said in a statement. 

Spearheaded by Pete Frates, a former Division 1 athlete with ALS, the Ice Bucket Challenge went viral in the summer of 2014. It pushed people worldwide to pour buckets of iced water over their heads and to share the moment on social media to raise awareness and funds for ALS research.

The campaign was wildly popular, engaging celebrities from Oprah to Bill Gates.

The Ice Bucket Challenge raised $88.5 million in a matter of weeks, allowing the ALS Association to fund several research projects, including Project MinE.  

“Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery,” John Landers ― who led the study, which involved 80 researchers ― 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.”

In addition to the support it got from the Ice Bucket Challenge, Project MinE was also funded by donations from the ALS Association’s Georgia and Greater New York chapters, and New Amsterdam City Swim, according to the release.

Seth Meyer dumps a bucket of ice on actor Mickey Rourke for the 'Ice Bucket Challenge.'
Seth Meyer dumps a bucket of ice on actor Mickey Rourke for the 'Ice Bucket Challenge.'

An estimated 20,000 people in the U.S. have the disease, according to the ALS Association ― and 15 new cases are diagnosed each day. There is still no cure.

Project MinE research was the largest-ever study of familial ― or genetic ― ALS, according to the release.

Experts have noted that a research paper published in the journal Science in March 2015 had already drawn genetic connections between the NEK1 gene and ALS. But further research was needed to confirm the gene’s connection to the disease, which is what this new study has achieved, according to Wade Harper, Professor of Cell Biology at Harvard Medical School, whose lab was part of a consortium of researchers involved in the 2015 paper. He said the new paper referenced the original research findings around NEK1 “appropriately.”

Muller was inspired to start Project MinE after he toured an ALS research center in the Netherlands and saw that thousands of DNA samples were left unused due to lack of funding. 

Thanks to ALS Association’s funding in 2014, Project MinE, an international initiative, was able to establish a research arm in the United States, led by Landers at University of Massachusetts.

The newly discovered NEK1 gene now ranks among the most common genes that contribute to the disease, providing a new potential target for therapy development.

This is the third ALS-related gene discovered thanks to funds raised through the massive fundraising effort, according to CNN. 

“I’m incredibly pleased with the discovery of the NEK1 gene,” Muller said, “adding another step towards our ultimate goal, eradicating this disease from the face of the earth.”


UPDATE: This article has been updated with additional information about a previous study that had drawn connections between the gene NEK1 and ALS. 

Justin Trudeau dumps a bucket of ice water onto Sean Casey for the ALS ice bucket challenge.
Justin Trudeau dumps a bucket of ice water onto Sean Casey for the ALS ice bucket challenge.


Famous People Doing The 'Ice Bucket Challenge'