The Ice Bucket Challenge, a viral sensation that helped to raise over a hundred million dollars to fund ALS research, helped scientists discover a new gene that causes the disease. $77 million (67%) of the $115 million raised during the challenge was allocated to research. And now, in a study found this week, it’s been announced that the contributions helped assist researchers locate a gene, NEK1, linked to the disease.
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The social media campaign became a viral phenomenon and raised $115m (€104m) from people who filmed themselves pouring freezing cold water over their heads and shared the videos online.
Pete Frates, a former Boston College baseball star suffering from ALS, was a driving force behind the Ice Bucket Challenge becoming such a huge fundraising success and himself was doused during a ceremony at Fenway Park.
“The discovery of NEK1 highlights the value of “big data” in ALS research”, said Lucie Bruijn, chief scientist for the ALS Association. Its exact cause is still unknown, though a minority of cases are inherited.
The University of Massachusetts Medical School’s Project MinE recently discovered the gene that is responsible for ALS.
The study, funded by donations from the Ice Bucket Challenge, helped identify a new gene researchers believe is one of the most common genes that contributes to ALS.
According to the nonprofit organization, the challenge spurred more than $100 million in donations, part of which went to a genome sequencing effort called Project MinE.
The discovery was made by Project MinE, which sequenced the genes of thousands of people worldwide and whose findings were published Monday in the journal Nature Genetics.
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The collaborative effort involved more than 80 researchers from 11 countries.
