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Ice Bucket Challenge Funded NEK1 Gene Discovery

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According to ALS Association, the Ice Bucket Challenge has funded an important scientific gene discovery in the progressive neurodegenerative disease ALS.

The Ice Bucket Challenge went viral in 2014 and raised $115 million from people, including prominent celebrities, pouring cold water over themselves and posting the video on social media.

The project was criticized as a stunt, but has funded six research projects.

Photo Getty Images

Photo Getty Images

Scientists have identified a new gene contributing to the disease, NEK1.


Research by Project MinE, published in Nature Genetics, is the largest-ever study of inherited ALS, also known as motor neurone disease (MND).

More than 80 researchers in 11 countries searched for ALS risk genes in families affected by the disease.

Lucie Bruijn of the ALS Association says: “The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available.”

The identification of gene NEK1 means scientists can now develop a gene therapy treating it.

Although only 10% of ALS patients have the inherited form, researchers believe that genetics contribute to a much larger percentage of cases.

Social media was awash with videos of people pouring cold water over their heads to raise money for ALS in the summer of 2014.

More than 17 million people uploaded videos to Facebook, which were then watched by 440 million people worldwide.