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ALS non-profit: Ice bucket challenge funded gene identification

By Shawn Price
ALS non-profit: Ice bucket challenge funded gene identification
Pittsburgh Pirates players takes part of a ASL ice bucket challenge by pouring water on fans following the Colorado Rockies 5-0 win at PNC Park in Pittsburgh on August 30, 2015. According to a new research paper, a breakthrough in the possible treatment for the disease was funded by donations raised through the challenge. File Photo by Archie Carpenter/UPI | License Photo

WASHINGTON, July 27 (UPI) -- The ALS ice bucket challenge that went viral in 2014 helped fund the discovery of a gene linked to the neurodegenerative disease, a new paper published Wednesday indicates.

Researchers identified the gene, called NEK1, as one of the most common genes connected to the disease. The discovery was funded by an increase in donations thanks to the ice bucket challenge.

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The study, the largest on inherited ALS, involved 80 scientists from 11 countries, led by John Landers, of University of Massachusetts Medical School in Worcester, Mass. and Jan Veldink, of University Medical Center Utrecht, in The Netherlands. The extra funds prompted the launch of Project MinE, the sequencing of some 15,000 genomes of people living with ALS.

About 10 percent of all people diagnosed with ALS, also called Lou Gehrig's Disease, that eventually leads to total paralysis and death, inherit the disease. Scientists believe genetics play a large role in the disease.

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"The discovery of NEK1 highlights the value of 'big data' in ALS research," said researcher Lucie Bruijn. "The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available."

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"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."

Landers expressed his gratitude for the funding the awareness publicity stunt provided.

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"Global collaboration among scientists, which was really made possible by ALS ice bucket challenge donations, led to this important discovery," Landers said. "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."

The ice bucket challenged was a social media-driven, online phenomenon in which people challenged friends and family to either donate money to the ALS Association or record themselves dumping a bucket of ice water over their heads. Some people did both.

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