Commentary

How one man accepted the challenge

Beyond buckets and ice water, Pete Frates leads the growing charge against ALS

Updated: September 8, 2014, 5:25 PM ET
By Brion O'Connor | Special to ESPNBoston.com

That voice.

Despite Pete Frates' imposing physical presence during the height of his baseball career, his voice is the attribute that friends and teammates remember most vividly. It was a youthful, full-throated voice of boundless exuberance, bravado and unadulterated joy.

"Pete was the leader of the outfield," said former Lexington Blue Sox teammate Steve Gath with a broad smile. "You could always hear him. He had a voice that really carried."

Today, Frates, 29, the former Boston College baseball star and inspiration behind the viral ALS Ice Bucket Challenge, has lost his voice to the ravages of amyotrophic lateral sclerosis. But thanks to the power of social media, Frates now has thousands of voices speaking on his behalf. Each ALS Ice Bucket Challenge video posted to Facebook, YouTube, Twitter or dozens of other websites brings another voice to the cause, continually raising awareness of this devastating disease.

[+] EnlargeFrates
Brion O'ConnorPete Frates was surrounded by friends and supporters at an ALS fundraiser in Cambridge on Saturday.
That groundswell of support has been staggering.

"As a jock and locker-room guy, Pete lived by the code, 'Go big or go home,'" said his father, John Frates. "But when the videos started jumping out of the immediate circle of family and friends, to pro athletes like the Bruins, Patriots and his high-profile BC classmates -- Matt Ryan of the Atlanta Falcons and Brian Boyle of the Tampa Bay Lightning -- it started to get crazy. The sheer power of association and calling out three or more to accept the challenge, it was the perfect formula to go viral."

According to the ALS Association, in the two-week span -- July 29 to Aug. 14 -- after the Ice Bucket Challenge began, almost 146,000 new donors have come on board. During that time frame, $7.6 million was donated to the ALS Association's various chapters, compared with $1.4 million during the same period in 2013. The national office was particularly flush, receiving $5.5 million of those donations, compared with $32,000 in the same period last year.

(Editor's note: Update from ESPN sports business reporter Darren Rovell:)

"It doesn't surprise me at all that Pete has been able to bring this kind of energy and enthusiasm to the fight against ALS," said Marblehead native Cory Schneider, the New Jersey Devils goaltender who knew Frates during his three-year career at Boston College. "The Ice Bucket Challenge has been truly amazing. What most people don't know is Pete has worked even harder in the two years prior to create attention and increase efforts to fight this terrible disease.

"These past few weeks have simply been the culmination of the hard work by his friends, family, supporters and, most importantly, Pete and his wife, Julie," said Schneider, who posted his own challenge video Aug. 4. "It is extremely gratifying to see, but the fight is nowhere near over."

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Frates is credited with creating the challenge along with friend and fellow ALS patient Pat Quinn of Yonkers, New York. For many of Frates' friends, the Beverly native was the right man at the right time to take up the gauntlet. When he was first diagnosed with ALS, commonly known as Lou Gehrig's disease, in the spring of 2012, Frates said the battle against the disease "is everything now. It's my life's work. It's what I believe the big man upstairs has put me here to do."

"That's just been my main focus since this started happening, to be a positive influence for other people who have the disease, be a positive influence for family and friends," said Frates. "At the end of the day, I want to be the cliché game-changer. I want to be the guy who shifts everyone's thinking and shifts where the funds are going. Selfishly, I want to give myself a chance but also give a lot of other people opportunity as well."

He has never wavered from that commitment.

"That's where my wife and I are the most proud of him, but we can't be surprised," said John Frates. "He's always been the leader. He's always been the team captain. He's always put himself before others."

NHL left winger John McCarthy said Frates took him under his wing when the two played hockey at St. John's Prep in Danvers.

"Pete's a great guy, and he always looked out for me," said the 28-year-old McCarthy, an Andover native. "Now you see his network of friends and how everyone is so supportive. That speaks to the kind of person Pete is."

[+] EnlargeFrates/Gath
Brion O'ConnorSteve Gath, organizer of the Young Faces of ALS Corntoss Challenge fundraiser, says Frates has inspired him to help others. "You have to get involved, put yourself out there and do your part. Pete laid that groundwork for me," he said.
Frates' story is a difficult one to process in its entirety. ALS doesn't recognize courage, willpower or good intentions. It is fatal. There is no known cure and no effective treatment. Frates has had to come to grips with the same prognosis Gehrig faced 75 years ago. He is now confined to a wheelchair, requiring near-constant care.

"Am I surprised about the progression of the disease? Of course I am," said John Frates. "I thought a 6-foot-2, 220-pound, ripped, powerful guy could keep this thing at bay while they figured it out. But what he's done for this movement, in one fell swoop, in one two-week period, has fast-forwarded this disease 75 years. It's incredible."

On Saturday, the ALS Therapy Development Institute in Cambridge hosted a Young Faces of ALS Corntoss Challenge to raise funds. First conceived in November, it likely would have been a small-but-worthwhile fundraiser for ALSTDI, a nonprofit research firm founded 13 years ago. Less than a month ago, fewer than 20 teams had signed up.

But the event got an unexpected bump from the Ice Bucket Challenge, and by the time the beanbags started flying, it had sold out all 65 slots with 130 competitors. More than 200 people attended the festivities, raising an estimated $25,000.

"This is what Pete tried to instill in us," said Gath, a 29-year-old commercial loan officer from Reading who helped organize the Boston Corntoss Challenge. "You have to get involved, put yourself out there and do your part. Pete laid that groundwork for me."

The obstacles facing ALS researchers and fundraisers are formidable, in part because the population suffering from the disease at any given time is relatively small. Currently, roughly 30,000 people in the United States are suffering from ALS in various stages. That number is a testament to just how ruthless the disease is. The average life expectancy of a person with ALS is two to five years after diagnosis, said Carol Hamilton, director of development for ALSTDI. As a result, ALS sufferers don't have a chance to build the community required to make a strong, consistent argument for increased funding.

The ALS Ice Bucket Challenge, however, has turned that paradigm on its head. First is the funding component, which always drives research. More importantly, though, is that the challenge is stripping away the mystery that surrounds the disease.

According to Dr. Fernando Vieira, director of research operations at ALSTDI, the Internet phenomenon has triggered interest, which has led to increased awareness.

"It's been almost surreal to see the world stop, look up and take notice of ALS," he said. "It's been a dream come true."

[+] EnlargeSteve Saling
Brion O'Connor ALS patient Steve Saling of Chelsea watches the corntoss action at Saturday's fundraiser.
Arthur Cronin, Frates' uncle, said the Boston professional sports fraternity has also stepped up, with the Bruins, Red Sox, Patriots and Celtics all lending a hand. Die-hard Boston fans, like Andrew Holden, a former South Boston neighbor of Frates, aren't surprised.

"The sports community in Boston is massive," said the 29-year-old Holden. "And when they get behind something, remarkable things can happen."

The Ice Bucket Challenge has reached far beyond the sports world, with celebrities including Justin Timberlake and Oprah Winfrey and billionaires like Bill Gates dousing themselves in ice water. ALS researchers are encouraged by the outpouring of support that the challenge has generated, but they are also pragmatic. Vieira said that while the viral nature of the Ice Bucket Challenge isn't sustainable, it has succeeded in promoting an understanding of the full scope of ALS.

"Now people notice us, and groups like ours, trying to make a difference," he said. "I think we'll have more people engaged over the long haul."

Vieira compared the ALS fight to the battle against multiple sclerosis. Once researchers and doctors began to make inroads against MS, patients started to live longer, which in turn provided more voices. Through the Ice Bucket Challenge, Frates and Quinn are doing the same for ALS, Vieira said.

"More people" translates to creating a larger community. A team, if you will.

Justin Silvestro of Waltham, who plays third base for the 2013 Intercity Baseball League champion Lexington Blue Sox, recalled a pump-up speech that Frates gave the team last year before a game against Reading at Endicott College.

"Pete told us, 'Baseball is a great game, but the best thing you can do is spend time with your teammates, creating that unbreakable bond,'" said the 21-year-old Silvestro. "He said, 'If you get to know the people you play with, you'll be unbeatable.'"

Those who have heard Pete Frates' voice have memories that won't fade with time. For those who haven't, they can find his message being repeated by his ever-widening support network throughout the Internet, loud and clear.

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