Ice Bucket Challenge Creator Starts New Season With Largest Group

Some may have viewed the Ice Bucket Challenge as a fad, but in fact the money it has generated has led to significant scientific breakthroughs — and its founders are revving up for more.

The “Ice Bucket Challenge” was created to raise awareness and donations for amyotrophic lateral sclerosis, or ALS. Someone challenges another person to pour a bucket of ice water over their head within a 24-hour period, or donate $100 to an ALS charity.

Pat Quinn of Yonkers helped create the challenge with friend Pete Frates and Frates’ wife, Julie. Quinn and Frates have ALS. They were inspired by a Pelham family, the Senerchias.

"You never think down the road what can happen," Quinn said Wednesday in an interview with Patch, thinking back to the beginning in 2014. "That there are breakthroughs because of the Challenge is amazing."

So far, the Ice Bucket Challenge has raised more than $220 million for ALS research. The ALS association had donated $1 million in Ice Bucket Challenge funds to a science research project that has recently identified one of the genes linked to the disease.

Building on the success of the campaign that popped up on millions of Facebook pages around the world, Quinn is now thinking just one thing: more ice and more buckets.

Hoping to break the U.S. record for the largest simultaneous ice bucket challenge ever, Quinn — an ALS Association Living Hero Award recipient who lives by the mantra “Every August until a Cure” — is embarking on his biggest endeavor yet at Empire City Casino in Yonkers, NY on Aug. 7, where hundreds of visitors will participate in one massive ice bucket challenge.

"It's a way we bring our community together for one day to support not just me but the ALS community," he said of the annual Yonkers event, where he and many of his fellow patients cheer on the crowd. "When you get to see hundreds of people willing to be silly, because they feel your cause and want to take part — it's not only inspiring to me but it puts smiles on people's faces. It's a happy day for everyone."

Interested in participating? Register via www.YonkersNY.gov.

Researchers from Project MinE announced in July that they have identified a gene — NEK1 — that is linked to ALS. The ALS association had donated $1 million in Ice Bucket Challenge funds to Project MinE to spur the US arm of the project.

“The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available,” ALS Association Chief Scientist Lucie Bruijn said in a release. “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.”

The gene discovered is related to familial ALS, which accounts for only 10 percent of cases. According to a report by Rare Disease Report, researchers noted a significant association between loss-of-function NEK1 variants and risk of familial ALS.

"The discovery of NEK1's role in the disease will provide an important new target for therapy development," the release read.

Participating in the 2016 Ice Bucket Challenge, in Yonkers or elsewhere in the Hudson Valley? Share your photos with Patch via email to Lanning.Taliaferro@patch.com.

"Every Drop Adds Up" — if you want to donate to the ALS Association, here's the link.

Patch Editor Joe Lipovich contributed to this report.

SCREENSHOT: a past year's Ice Bucket Challenge in Yonkers/ from Quinn for the Win on Facebook