Ice Bucket Challenge Pays Off Big Time


The ALS Association says the money raised by the ‘ice bucket challenge’ craze has helped researchers identify a gene that contributes to amyotrophic lateral sclerosis. That could provide a new route for providing therapy for the incurable disease.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which leads to total paralysis and death, usually within two to five years of diagnosis.

The gene, NEK1, was identified through a study involving 80 researchers across 11 countries. According to the ALS Association, the key to the study was the sheer volume of “biosamples that are designed to allow exactly this kind of research and to produce exactly this kind of result.”

The study involved not only identifying the gene, but assessing samples from 13,000 people with ALS to confirm that a variation in the gene was overrepresented in them compared with people who don’t have the condition.

Back in 2014, a relatively new trend for dumping cold water over your head in return for charitable donations morphed into the “ice bucket challenge” when several celebrities specifically nominated ALS research as the target of their fundraising. The trend went “viral” thanks to the idea catching on of the newly-soaked participants nominating three other people to take the challenge.

While it was clear many people taking part did so without paying much heed to the charitable element, enough people donated that the ALS Association reported receiving more than $100 million in a one-month period compared with getting $19.4 million in a previous full year.

One of the key ways the association spent the money was funding Project MinE, which produced the newly announced finding. As well as financing the actual research, the project helped coordinate teams around the world to create the huge pool of samples that led to the breakthrough.

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