Money raised to support research into Lou Gehrig's disease, also known as amyotrophic lateral sclerosis (ALS), has led to the discovery of a gene linked to the degenerative condition, the ALS Association announced Monday.
The Ice Bucket Challenge, which involved people dumping a bucket of ice water on their head to raise awareness—and money—for the ALS Association, first became a viral internet sensation two summers ago. The initial campaign ended up raising $115 million for the association. Many public figures, ranging from former president George W. Bush to Ellen DeGeneres, joined in to spread the word.
On Monday, the ALS Association announced in Nature Genetics that money raised by the challenge had led to a major research development: Researchers discovered a gene called NEK1, which is associated with 3 percent of ALS cases.
They discovered the gene as part of a global gene-sequencing effort called Project MinE that spanned 11 countries. The Ice Bucket Challenge allowed the ALS Association to make a $1 million contribution to the project and "initiated the U.S. arm of [the] international effort," association spokesperson Carrie Munk said.
A global effort
John Landers of the University of Massachusetts Medical School, who co-led the study which discovered the gene, said, "Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery." He added, "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."
Brian Frederick, EVP of communications and development for the ALS Association, said that the discovery of the NEK1 gene was important but not necessarily a breakthrough. About 30 genes tied to the disease have already been identified, according to the New York Times.
However, Frederick said identifying a broad base of genes is important because it means that "treatments won't be limited to one subset of people with ALS, but that it might be a more broad group" (Rogers, New York Times, 7/27; Fares/Serjeant, Reuters, 7/27).
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