Origins of the Ice-Bucket Challenge

WSJ

How the Ice-Bucket Challenge Got Its Start

Celebrities raise money for Lou Gehrig’s disease in a social-media stunt that exploded

By Sumathi Reddy

August 14, 2014

One of the biggest stunts online and in social media right now had very low-key beginnings on the professional golf circuit.

The so-called ice-bucket challenge—dump ice water on yourself, post and tag yourself on social media and challenge others to do the same—got its start among golfers as a way to support pet charities. In just a few weeks, it has become a major fundraising coup for patients and organizations with ALS, a neurodegenerative disorder. It is commonly called Lou Gehrig’s disease, after the baseball player who had it.

The campaign has caught people ranging from New Jersey Gov. Chris Christie to Facebook FB -0.03% chief executive Mark Zuckerberg and performer Justin Timberlake.

In the past 30 days, there have been more than 118,000 tweets mentioning the #icebucketchallenge, according to Topsy, a social analytics company. It began slowly with just over 100 tweets on July 15 and then exploded this past week, with daily tweets of more than 32,000.

As of Thursday, the ALS Association, a national advocacy, care and research association with 38 chapters, had raised $7.6 million in donations in two weeks. That compares with $1.4 million raised during the same two-week period last year. The donations came from existing donors and 145,918 new donors, said a spokeswoman for the group.

The rapid pace of donations has stunned ALS groups who are used to relying on a very close-knit group of donors, most often the friends and family of the 20,000 to 30,000 people in the U.S. with the disease.

“It’s very difficult to fundraise because most people have never heard of ALS and it’s a very complex disease to discuss and explain,” said Lance Slaughter, head of fundraising for the ALS Association. “We don’t have survivors of this disease.”

Amyotrophic lateral sclerosis is a motor neuron disease that causes nerve cells to break down and die. There is no treatment or cure.

There have been other ice-bucket challenges, including one by “Today” show anchor Matt Lauer, who did one live on air in July for a hospital.

Then, on July 15, golfer Chris Kennedy did the ice-bucket challenge and challenged his cousin Jeanette Senerchia of Pelham, N.Y., whose husband, Anthony, has had ALS for 11 years. A day later she did the challenge while her 6-year-old daughter filmed her in front of their house.

“Our whole town got involved as well as my husband’s older siblings and their friends on Facebook, so it just kind of blew up and it was nonstop,” said Ms. Senerchia.

Ms. Senerchia’s network on Facebook connected with Pat Quinn, a 31-year-old in Yonkers, N.Y., who was diagnosed with ALS in March 2013. “A friend of mine was a friend of theirs and when they commented on it I saw it,” said Mr. Quinn.

Mr. Quinn called upon his friends and family. Soon, his whole network was posting challenges, including family in Florida, friends in Ireland and Greece, and a bar full of locals, which was broadcast on local television.

Mr. Quinn’s Facebook network overlapped with Pete Frates, a 29-year-old former Boston College baseball player who was diagnosed with the disease two years earlier. Mr. Frates, once a top athlete, lost his ability to talk several months ago, can’t move his arms or legs and relies on a feeding tube.

In Boston the challenge went viral as professional baseball players who knew Pete from college lined up to do the challenge, followed by politicians, celebrities and business leaders.

Other ALS groups also are benefiting. Rob Goldstein, a vice president at the Boston-based ALS Therapy Development Institute, a nonprofit biotechnology organization funding research, said the group received 10 times the number of donations over the past two weeks than in the same period last year, totaling $403,998. That enabled it to help fund a precision-medicine project that launched Monday, he said. By comparison, the group raised $133,249 in the year-earlier period.

Project ALS, a New York City nonprofit that funds scientific research, has raised about $30,000 from 550 donations over the last two weeks compared with just $1,000 from a handful of donors in the same period last year.

Valerie Estess, co-founder of Project ALS, said the group is trying to capitalize on the momentum through social media and emails, challenging celebrity friends that have supported them in the past.

“I’m sitting on a few people pretty hard right now,” she said. “I just hope that the momentum continues. I really expect that some of the interest will live on beyond this spike.”