Ten years since he captivated the world with The Ice Bucket Challenge, and five years since his passing, The Peter Frates Family Foundation continues Pete’s fight to find a cure and forever put ALS on ice.
A FEW YEARS AGO, a young man named Billy Brown from Brockton was dying of ALS. Billy was about as far from Pete Frates in life as one could be.
Pete was a Boston College baseball star with movie star good looks, countless friends, an amazing young girlfriend, a professional career and a social calendar that was always full. His future was bright.
Billy was a convicted felon who was in and out of jail. He had a few close friends, but he was struggling to get on his feet after his release from prison.
None of that mattered, though, to John Frates.
In January 2019, John was asked if he would come to a fundraiser to support Billy. It was at the former Great Scott in Allston and it was organized by Billy’s friends to try and raise a few bucks for him as he fought for his life. Billy’s story wasn’t on the national news. His battles with ALS weren’t covered by ESPN, as Pete’s were.
While Pete had the best care money could buy as he battled “The Beast” – as the Frates family calls ALS – Billy was mostly alone. He spent his final days dying on a couch in his sister’s house in Brockton. He had no money, no health care and no hope.
And that’s why John Frates went to the fundraiser. He spent time that night talking to Billy about his life. He took the stage and told Billy’s friends about Pete and about the injustice and the horrors of ALS. Billy, who was already wheelchair-bound, smiled and seemed genuinely grateful that someone like John, who he had never met before, showed up to the fundraiser simply because he cared.
They raised some money that night that hopefully helped Billy a bit throughout his agonizing final days. John Frates stayed in touch with Billy. They texted and sometimes spoke by phone, right up until Billy could no longer communicate.
Billy passed away March 4, 2020. John was very upset when he got the news, even though he knew it was inevitable because ALS patients generally don’t live more than a couple years after diagnosis. John, his wife Nancy, and the rest of the Frates family, had been through this many times before.
Since their son, Pete, became the global face of ALS in 2014 when the Ice Bucket Challenge exploded onto social media and changed the world forever, the couple had sadly connected with countless ALS patients who came into their lives briefly, only to succumb to the cruel illness.
“I think about Billy a lot,” John confided recently. “Just so sad.”
It’s a snapshot into the very soul of the Frates clan. They never asked for this massive, impossible responsibility. They never wanted to be ALS Warriors, as they’re often called. It was a task thrust upon them when their son was diagnosed and embarked on an historic and culture-shifting journey to battle the deadly disease physically and through social media innovation.
“My first emotion I always feel is pride,” Nancy Frates says, reflecting on the 10-year anniversary of the Ice Bucket Challenge phenomenon brought to life by her son. “An enormous pride that this was my kid. The fact that my kid took a situation that was so dire, set a vision, hours after he was told he only had three-to-five years to live, and was so dedicated to helping others. I’m just so proud of who he was as a person.”
“I always say it was a life well-lived.”
In 2012, as the disease was first starting to take over Pete’s body, he made a commitment to himself and his family to fight ALS – a nervous system affliction known clinically as Amyotrophic Lateral Sclerosis and commonly as Lou Gehrig’s Disease – not only for himself, but for others. Pete was raised in a Catholic family. He graduated from Boston College, a Jesuit institution with a motto of “men and women for others.” He took that motto to heart and lived it every day.
A baseball fanatic, one of Pete’s idols was Lou Gehrig, the New York Yankees slugger who was the original face of ALS when he was stricken in 1939. Gehrig gave his historic “luckiest man on the face of the earth” speech at Yankee Stadium when he retired, a heartbreaking appearance often called “baseball’s Gettysburg Address.”
Following the speech, Gehrig lived in seclusion until he died in 1941 at age 38. While Pete idolized Gehrig, he vowed not to go so quietly. Rather, he pledged to show the world the horrors of ALS up close and personal and demand funding for research to cure the evil disease. He and his family took up a rallying cry: it might be Lou Gehrig’s disease, but it will be Pete Frates’ cure.
In those first months fighting ALS, Pete married his BC girlfriend, Julie. While he was wheelchair bound at their 2013 wedding, he surprised everyone by getting up out of his chair and walking her down the aisle. The young couple adjusted to their complicated life together as Pete’s condition rapidly worsened and his medical needs grew exponentially. The family set up the Pete Frates Family Foundation to help cover the staggering costs of his care, which ballooned to $100,000 a month.
They held golf tournaments and nights at local bars, raising a few thousand here and a few thousand there, but Pete was looking for a way to launch a global movement. He found it when he connected with another ALS patient in New York named Pat Quinn, who showed Pete a video of golfers dumping cold water over their heads to raise money for various causes.
It was the proverbial flash of genius, and Pete seized upon it. He had been an early adopter of Facebook while at BC and had already been using the fledgling platform to connect with other ALS patients – like Pat. In the summer of 2014, Facebook feeds were mostly filled with words, pictures and links to news articles. Videos were new to the platform. Facebook had no idea what was about to happen.
Pete mobilized an army of friends and family and tapped his vast network of alum from BC as well as his high school, St. John’s Prep in Danvers. The task was simple: film yourself dumping a bucket of ice water over your head, tag three other people and ask them to donate money to find a cure for ALS. They would use Facebook, and soon Twitter, to pump out the videos to raise ALS awareness.
His web grew as the Ice Bucket Challenge made its way to Boston sports stars like former BC quarterback Matt Ryan, a classmate of Pete, and Red Sox home run king David Ortiz. Soon, Oprah Winfrey, Steven Spielberg, LeBron James, Justin Bieber, George W. Bush, and countless other celebrities posted videos of themselves taking the icy plunge for ALS. Hosts on “Good Morning America” did it on live TV as the challenge, the first of its kind, spread like wildfire across the globe.
In the midst of all the madness, Pete and Julie welcomed their daughter, Lucy, to the family. She was a blessing to the young couple and brought immeasurable love and joy to Pete as he waged a fierce battle against ALS.
The videos became more and more creative and fun. Nuns did it on top of a mountain. Mark Zuckerberg himself did it with a recycling bin. The entire New York Jets team got hosed down by firefighters from a ladder truck. Bill Gates created a contraption to pour the bucket over his head. People embraced the viral sensation and millions flowed into ALS foundations. Pete’s plan was working.
By the end of the summer of 2014, the Ice Bucket Challenge raised at least $220 million, including $115 million for research for the ALS Association. Before the Ice Bucket Challenge, ALS was not in the top 30 most well-funded diseases in medicine. After the viral phenomenon, it was in the top three.
Facebook invited the Frates to Silicon Valley to meet with top executives to discuss what they had done. Besides raising hundreds of millions for a disease, the Frates and their digital army showed Facebook the power of its own platform and inadvertently created viral philanthropy. A donate button was soon added to Facebook thanks to the efforts of Pete and his followers.
In the wake of the global success of the Ice Bucket Challenge, Pete was named an honorary BC baseball coach. He was dubbed the “Inspiration of the Year” by Sports Illustrated at a ceremony in New York where he was honored by President Bill Clinton and Magic Johnson.
He was signed to a one-day contract by the Boston Red Sox. He did the Ice Bucket Challenge himself on the hallowed grass at Fenway Park, where he once slugged a home run for the BC Eagles in the Beanpot. And in 2018, he was enshrined in the Baseball Hall of Fame in Cooperstown, N.Y.
“The Ice Bucket Challenge doesn’t happen if Pete wasn’t the person he was,” Nancy Frates says. “We are keeping Pete’s mission going, and our promise to Pete is what drives us every day. We honor him every day.”
Since that incredible summer of social media fundraising, the ALS Association has committed $154 million to support 50 promising new treatment drugs, while two breakthrough drugs – Radicava and Qalsody – have been approved by the Federal Drug Administration. A dozen new genes linked to ALS have been identified while annual federal spending on ALS research has tripled from $56 million in 2013 to $167 million in 2023, according to the ALS Association.
The Frates family was crushed when Pete finally lost his battle on Dec. 9, 2019 at age 34. Not only was he an inspiring and heroic son, brother, husband, father and friend, he was the biggest ALS advocate the world had ever seen. He had undeniably changed the course of the disease, as well as social media, forever.
Lucy is now 10 and her dad is her hero. Julie continues to keep Pete’s memory alive, participating in fundraising events for the foundation and telling their incredible story in speaking engagements. John and Nancy have since sold the family home and live in Florida while continuing their ALS advocacy on a national level and helping with the foundation.
Facebook is planning to celebrate the 10-year anniversary of the groundbreaking social media movement this summer, while the family will memorialize Pete by doing the Ice Bucket Challenge on Aug. 1 at a Fenway Park event sponsored by the Red Sox and NWN Carousel, a Boston-based cloud communications service provider.
The foundation continues to hand out hundreds of thousands in grants to help families of ALS patients across the U.S. cover the overwhelming costs of care. In 2023, the foundation gave out more than $300,000 to 67 families in 33 states. Many are the families of ALS patients with minimal resources. Patients like Billy Brown.
“We feel we’re very lucky,” Nancy says. “A lot of people who have lost children, one of the emotions you feel is you don’t want them to be forgotten. So, we are just so honored, that we get to continue to talk about him. We get to introduce him to new generations of kids.”
“When Pete was diagnosed in 2012, we didn’t even know where the tunnel to the cure was,” she continues. “But today not only are we in the tunnel, but we can see the light at the end of it. Re-engage with the ALS community – do a walk, go to an ALS event. We need you to stick with us. We really need to stop this disease.”
For more information on the life and mission of Pete Frates to find a cure for ALS, please visit petefrates.com. Any type of support is greatly appreciated!
