Ice Bucket Challenge money distributed to ALS researchers

By Isabel Vincent and Melissa Klein August 9, 2015 | 8:42am

Crowds in Central Park attempted to set a new ALS Ice Bucket Challenge world record on August 8th.Photo: Robert Miller

Taylor Swift did it. Lady Gaga did it. Eli Manning did it. In fact, so many participated in

the Ice Bucket Challenge that $220 million was raised to fight ALS, or Lou Gehrig’s

disease.

So one year after the phenomenon, how is the money being spent?

In New York, Dr. Robert Darnell is one of the beneficiaries. The New York Genome

Center, where he is the president and scientific director, received $2.5 million in

challenge money from the ALS Association. Half of that money came from the national

headquarters and half from the New York chapter of the group, which took in about $4

million in challenge cash.

“We had no idea how successful the Ice Bucket Challenge would be,” Darnell told The

Post. “This is a wonderful surprise that was given to us by the citizens of the world.”

The study at the New York Genome Center will involve sequencing the DNA from ALS

patients. There is no cure for ALS.

“All of this is a game of trying to find the Lou Gehrig’s needle in the big haystack of

DNA,” Darnell said. “The technology for doing DNA sequencing is rapidly improving

and that’s allowing us to do finer and finer searches for needles in haystacks.”

Rows and rows of state-of-the art machinery at the Soho-based center can sequence the

DNA of one person about every 30 minutes.

Last year’s fund-raising phenomenon is estimated to have brought in $220 million

worldwide. Of that, $115 million went to the national headquarters of the ALS

Association in Washington, DC. The organization said it has earmarked $47 million of

the challenge money so far, including $33.5 million going to research.

In the case of The Genome Center project, the ALS Association funding matched a $2.5

million grant from the Tow Foundation.

Darnell, a neurologist who studied ALS for years as a researcher at Rockefeller

University, said the cause of the disease is probably more complicated than a single bad

gene.

“That would be too easy,” he said. “It might be a combination of genes, and figuring that

out is a very complicated question that requires the expertise of many different

scientists — genomic scientists, computer engineers, maybe even mathematicians.”

The nonprofit Genome Center opened its Soho quarters two years ago. Research is also

focusing on brain cancer and rheumatoid arthritis.

The ALS Association kicked off a new round of challenges this month, asking people to

get wet, post a video on social media and make a donation.