It’s been 10 years since the Ice Bucket Challenge washed across the internet, bringing people together to spread awareness of amyotrophic lateral sclerosis (ALS) as participants had buckets of ice water poured over their heads and nominated others to do the same. In this SC Featured, our colleagues at ESPN reflect on a challenge, a hope and a legacy.
Vital in kicking off the challenge was the late Pete Frates, who was 27 when he was diagnosed with the rare illness in 2012.
“I can't believe it's been 10 years, honestly,” Pete’s wife Julie Frates told ESPN. “I can so vividly remember waking up in the morning … Pete and I would look at each other and be like ‘Who did it now?’ Every morning it got crazier and crazier.”
MLB star Derek Jeter, actor Dwayne “The Rock” Johnson and beloved Muppet Kermit the Frog were among the celebrities who got soaked after Pete Frates got the ball rolling on social media in August 2014.
The Beverly, Massachusetts, man grew up playing baseball, hockey and football, using his skills to make the baseball team at Boston College.
Frates' home run helped propel Boston College to victory over Harvard at Fenway Park, winning the Baseball Beanpot championship game in 2006. Six years later, his diagnosis came.
“When those three letters came across the room to Pete, and when I heard the doctor say, ‘Three to five years, 100% fatal,’ ” his mother Nancy Frates told ESPN, “it hit me like my world had collapsed.”
ALS, often referred to as Lou Gehrig's disease after the baseball player who was diagnosed with the illness in 1939, is a terminal neurological disorder that affects motor neurons, the nerve cells in the brain and spinal cord, according to the National Institute of Neurological Disorders and Stroke. It breaks those cells down, causing muscles to weaken, and eventually the brain loses the ability to initiate and control voluntary movements, such as walking, talking and breathing, among others.
ALS has no cure, but Frates was determined to wage war on the illness in any way he could.
“For a young guy like myself to be diagnosed, hopefully I can use my youth and the networks that I’m part of to promote some awareness,” he said in 2012.
Frates pushed the FDA to speed up the process of eradicating ALS, and his primary physician Dr. Merit Cudkowicz suggested it would take a billion dollars to do so.
“He said, ‘We're going to get that.”
In late July 2014, Frates saw fellow ALS patient Pat Quinn posting ice bucket challenge videos on Facebook.
“Pete pulled me aside and said, ‘This is it. This is what's gonna be the game-changer for ALS,’ ” Pete’s brother Andrew Frates said of that moment.
Frates called on them each to do similar challenge videos, upload them to Facebook and challenge others. His brother Andrew thinks NFL wide receiver Julian Edelman, then with the New England Patriots, was the first nationally profiled player to do the challenge.
Athletes and others from across the country followed suit, with many donating to ALS charities via Frates’ Facebook page. It took three weeks to jump from the world of sports to celebrities in entertainment, as Dr. Dre, Matt Damon, Taylor Swift and Oprah got soaked in ice water.
“Pete finally admitted that it had gone way beyond his dreams. And he has big dreams,” his father John Frates said “He was very proud of the movement.”
Facebook, which was tracking the numbers, noted that they were unprecedented.
“We saw over 17 million videos related to the Ice Bucket Challenge shared on Facebook, and over 440 million people saw those videos. Those numbers are staggering. It reached almost every country,” Naomi Gleit, head of product at Facebook parent company Meta, said. “This was truly one of the biggest online movements that we'd ever seen.”
Nancy Frates recalled getting reports about the money.
“In the United States, it raised $115,000,000 in six weeks,” she said. “And worldwide, close to a quarter of a billion dollars.”
That money went to fund ALS research and helped provide care for some patients living with the disease.
“Hope is a great motivator. It was Pete that gave us the hope,” Nancy Frates said.
Less than a year after the Ice Bucket Challenge, Frates decided to go on a ventilator. It kept him alive and gave him more time with his daughter Lucy.
“We both are non-verbal, so I believe we share a special bond unlike many fathers and daughters,” he said via an eye-tracking communication device in 2015. “She knows I love her and that she can get away with anything. She has me wrapped around her little finger.”
Frates’ wife Julia noted that his eyes told his loved ones what he was feeling until his final days. He died on Dec. 9, 2019.
Lucy, who was born after the Ice Bucket Challenge took off in 2014, still talks about her father’s important work.
“Although there is no cure for ALS yet, there will be one day soon and Pete and the money he helped raise will be largely to thank,” she said in a class presentation.
She and her mother keep his memory alive at home too, especially as Lucy dives into sports.
“To just see her on the field, he would just be head over heels for that,” Julia said. ”When she does something, I'm like ‘That is so your dad’ and ‘Your dad would love that.’ ”
She also wants the momentum Frates helped create around ALS to continue to propel medical research.
“I hope … that we find a cure for ALS,” she said.
To watch ESPN’s full “SC Featured: Pete’s Legacy,” please go to ESPN.com or the ESPN app.
ESPN’s Danny Arruda and Benjamin Webber contributed to this report.