Ice Bucket Challenge|Nets Results in ALS Fight

     (CN) — The viral Ice Bucket Challenge celebrated its second anniversary over the weekend with news that money raised by the campaign led to the discovery of a gene that could be critical to developing future treatments for ALS.
     The campaign has raised nearly $160 million for the ALS Association, of which, about 67 percent was dedicated to advancing research aimed at identifying treatments and ultimately a cure for the disease also known as Lou Gehrig’s disease.
     In a study published Monday in the journal Nature Genetics, researchers said they have identified the gene NEK1, which one of the most common genes for the progressive neurodegenerative disease that impacts nerve cells in the brain and the spinal cord.
     Patients suffering from ALS may lose the ability to eat, speak, move and ultimately breathe. Many ALS patients die within five years.
     While this is the third gene discovered using funds donated by Ice Bucket Challenge viewers and participants, this discovery is particularly significant since it was found through Project MinE, an initiative run by ALS patient Bernard Muller.
     “The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world. This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS,” Muller said. “I’m incredibly pleased with the discovery of the NEK1 gene adding another step toward our ultimate goal, eradicating this disease from the face of the earth.”
     Project MinE is one of the initiatives that received funding from the ALS Association after the Ice Bucket Challenge went viral in the summer of 2014. The goal of the project is to sequence the genomes of at least 15,000 people with ALS in order to discover how various genes affect the disease — whether they increase risk or protect an individual from developing it.
     “The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available,” said Dr. Lucie Bruijn, chief scientist at the ALS Association. “The ALS Ice Bucket Challenge enabled The ALS Association to invest in Project MinE’s work to create large biorepositories of ALS biosamples that are designed to allow exactly this kind of research and to produce exactly this kind of result.”
     About 17 million people have posted videos of themselves participating in the Ice Bucket Challenge, which require people to dump a bucket of ice-cold water over their heads. The challenge has been completed by various celebrities, including basketball star LeBron James and Facebook founder Mark Zuckerberg.
     Though the campaign was criticized as being a form of “slacktivism” — lazy activism — that wastes water, the peer-to-peer fundraising and social media ubiquity of the challenge has produced tangible results only two years after the Ice Bucket Challenge began.
     “Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery,” said John Landers, a co-leader of the study. “It is a prime example of the success that can come from the combined efforts of so many people, all dedicated to finding the causes of ALS.”
     The ALS Association is seeking to continue the progress initiated by the Ice Bucket Challenge by launching a new campaign in August called Every Drop Adds Up.

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