“It turns out those much-mocked Ice Bucket Challenge videos helped do a lot of good. Two summers ago, the challenge, designed to raise money for research into amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, took the Internet by storm. Supporters ended up raising over $115 million for the A.L.S. Association.
Over two years, money from the challenge has helped fund the research and development of treatment drugs and has been used as prize money to entice people to design technology for people living with the disease, which causes a rapid breakdown in a person’s ability to control muscle movement.
The association released a chart last year showing where the funds went:
• $77 million, or 67 percent, went to research.
• $23 million, or 20 percent, went to patient and community services.
• $10 million, or 9 percent, went to public and professional education.
• $3 million, or 2 percent, went to fund-raising.
• And $2 million, roughly another 2 percent, went to payment processing fees.
The latest development, announced by the association this week, falls into the research category: It’s the discovery of NEK1, which scientists say is among the most common genes that contribute to the disease and is associated with 3 percent of A.L.S. cases. The discovery, published in Nature Genetics, is the result of a global gene-sequencing effort involving 11 countries and 80 researchers, called Project MinE.
The challenge money allowed the association to invest $1 million in Project MinE, and “initiated the U.S. arm of this international effort,” Carrie Munk, a spokeswoman for the association, said.
The discovery of NEK1 is significant but is not a breakthrough — some 30 genes tied to the disease have already been identified — according to Brian Frederick, executive vice president for communications and development for the A.L.S. Association.
Mr. Frederick said that the discovery of the gene could eventually mean, “treatments won’t be limited to one subset of people with A.L.S., but that it might be a more broad group.”
New York Times July 28, 2016
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