The Man Behind the ALS Ice Bucket Challenge’s ‘Viral Storm’

Barry Chin/The Boston Globe via Getty Images(NEW YORK) — The ice bucket challenge was the trend of the summer, soaking the nation in a waterfall of frigid water and charitable giving, with countless videos filling Facebook news feeds and Twitter messages.

While the challenge was taken by thousands of Americans – including well-known athletes, celebrities, and politicians – the inspiration behind the challenge is less widely known.

Pete Frates, a former baseball player for Boston College, was 27 years old when he started experiencing symptoms of ALS, often referred to as Lou Gehrig’s disease. But almost immediately after receiving the devastating diagnosis, he set to work.

Frates can no longer speak on his own, but his mother Nancy explained that he was “ready with the vision” just hours after his diagnosis.

“‘What an opportunity we’ve been given to change the world … I’m gonna get this disease in front of philanthropists like Bill Gates,’” she recalled him saying.

Frates wasn’t the first to take the ice bucket challenge or to come up with it, but he was perhaps its best marketer – turning an Internet challenge into a charitable sensation.

Frates and a friend from New York who also has ALS had seen occasional fundraising by sports figures that involved them throwing ice water for good causes.

So Frates staged a mass bucket challenge in downtown Boston with one choice: make a donation for ALS research in 24 hours or dump a bucket of ice water over your head.

“It was amazing. It was stupendous. It’s incredible, and that was week one,” explained Frates’s father, John Frates. “Then when it went national, I’m saying, ‘My God, this is what it feels like to be in the middle of a viral storm.’”

Despite its contagious popularity, the challenge was not without its critics, many whom said it gave people an excuse not to donate money directly to the cause, while others felt the challenge was becoming more about the videos and less about the message.

But the ALS Association has no such qualms.

“The awareness level of ALS just went through the charts,” President and CEO Barbara Newhouse told ABC News. “Prior to the ice bucket challenge, most people – if you said ALS – they would not have been able to tell you anything about it.”

The challenge has raised about $115 million to date, but Newhouse said they still have a long way to go, explaining that it can take up to $1 billion to bring a new drug to the market.

Even so, the ice bucket challenge has changed the Frates family – every cube, every bucket an individual show of support.

“The power, the joy, the hope that came through on those videos back to Pete, number one, and ourselves,” Nancy Frates said.

“It’s almost like we got a visual, ‘we’re with you,’ from every person doing it,” added John Frates.

Nancy Frates said her son’s challenge may one day be what started the path to unlocking the key to curing ALS.

“Those that are now living with ALS and those that are yet to be diagnosed – the head researchers that we know, the head doctors in this field, have said to us over and over again, ‘This is it. When the treatment is found and the cure is found, it will go back to August 2014 as the tipping point in the trajectory of this disease … and it was Pete Frates.’”

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