Donations From ALS Ice Bucket Challenge, Despite Criticism, Lead To Gene Discovery

Donations From ALS Ice Bucket Challenge, Despite Criticism, Lead To Gene Discovery
Commissioner’s Bucket Challenge Knox County Government CC BY-ND 2.0
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The ice bucket challenge has led to a breakthrough discovery.


The online campaign, which started in the summer of 2014 and required people to pour a bucket of iced water on their heads to solicit donations, received its fair share of negative reactions.

According to Slate, “for most of the people posting ice bucket videos of themselves on Facebook, Vine, and Instagram, the charity part remains a postscript.”

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TIME, on the other hand, called the challenge “problematic in almost every way,” adding that “most of its participants … didn’t mention the disease at all. The chance to jump on the latest trend was an end in itself. In fact, the challenge’s structure seems almost inherently offensive to those touched by ALS.”

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Celebrities like Mark Zuckerberg, Tom Cruise, and Robert Downey Jr., among others, took the challenge.

Despite being criticized by some, as many as $100 million were raised as part of the campaign in a period of 30 days. This amount has funded multiple research projects.

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Researchers of Project MinE’s global gene sequencing effort, which was funded by The ALS Association through ALS Ice Bucket Challenge donations, have found a new ALS gene, NEK1, that contributes significantly to the disease.

ALS, a progressive neurodegenerative disease, targets the nerve cells in the brain and spinal cord which diminishes the ability of those suffering from it to control muscle movement, according to ALS Association. This, the association noted, could lead to paralysis and death normally within two to five years of being diagnosed.

Ten percent of the disease is hereditary, while the remaining 90 percent is considered sporadic.

Brian Frederick, executive vice president of communications and development at the ALS Association, spoke about how the contribution of those who participated in the ice bucket challenge benefitted the research.

“The work that Project MinE is doing is really important, and the discovery of this new gene will help us better understand ALS,” Frederick said, as quoted by The Guardian.

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