That silly ‘Ice Bucket Challenge’ from two summers ago led to a breakthrough in the fight against ALS

Two summers ago, lots of people, including me, mocked the viral “Ice Bucket Challenge.” Looks like the joke is on us.

The challenge involved participants, many of whom were athletes and celebrities, pouring ice water over their heads to help raise awareness of amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. As far as I could tell, it was a mind-numbingly amusing way to watch people’s silly reactions to being doused with freezing water – some of which were obviously fake – on those lonely nights of browsing for hours through videos in my newsfeed.

Ultimately, the effort raised more than $100 million in contributions to the ALS Association, $1 million of which went to the Project MinE research project. Okay – well done.

But in an amazing development, that silly viral sensation actually led to scientific breakthrough in the fight against ALS, allowing researchers to identify a gene that people with the disease have most in common that affects neurons in the brain and spinal cord.

“The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world,” said Bernard Muller, an entrepreneur who suffers from ALS and helped launch the research. “This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS. I’m incredibly pleased with the discovery of the NEK1 gene adding another step towards our ultimate goal, eradicating this disease from the face of the earth.”

The research, published this week in the science journal Nature Genetics, has found NEK1 to be present in 3 percent of cases in North America and Europe — a discovery that will help scientists better understand the disease and develop new treatments.



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