December 9th marks the 1-year anniversary of the passing of Boston’s courageous Pete Frates. Now, Mary and Zoe Bucuvalas continue the fight to one day find a cure for ALS
Six years ago, former New England Patriots cheerleader Zoe Bucuvalas met Pete Frates and his family at a game at Gillette Stadium. She didn’t know much at the time about ALS – the horrible disease that slowly robbed Frates of his life and led to his death last year.
But she knew he and his family were superstars and were on the cutting edge of viral philanthropy as it was the height of the Ice Bucket Challenge craze, a social media phenomenon driven by Pete, a former Boston College baseball player.
“They were just super inspiring. Incredible,” Zoe recalls. “That was when the Ice Bucket Challenge was really huge.”
It was her mother, Mary, who first told her about the Ice Bucket Challenge, and after the game, she told her mother about meeting the Frates.
“You and your friends have to put on your Patriots gear and get out your pom-poms and do a video,” Mary Bucuvalas told her daughter.
So Zoe and a group of Pats cheerleaders did just that. Mary recorded the video.
Little did the mother and daughter know that just a few years later, Mary herself would be stricken with the deadly illness.
“I didn’t know what it was. I was having spasms in my hands. And I would fall,” Mary, 75, said.
She had a knee replacement in 2019 but wasn’t healing as quickly as she and her doctors expected. She was going to physical therapy right up until February, but had to stop as the COVID-19 pandemic hit.
She still cooked for herself, showered on her own and was functioning, although there were signs that something more was wrong than just slow healing from surgery.
“I just really saw her decline quickly,” Zoe says.
She saw her primary care doctor and they ordered a brain scan. Doctors thought perhaps she had a stroke or maybe it was multiple sclerosis. But the tests came back negative.
“For the last year and a half, I had a feeling in my gut that something was off,” Mary said. “I thought it was going to be MS or a stroke. I never thought it was going to be ALS.”
She was sent to a neurologist at Beth Israel Deaconess Hospital for more tests. In July, their worst fears were confirmed when doctors at BI gave her the grim diagnosis that she had ALS – amyotrophic lateral sclerosis. It’s a nervous system affliction, commonly known as Lou Gehrig’s disease, that attacks nerve cells in the brain and the spinal cord. There is no treatment and no cure and it is fatal.
“At first, it was really difficult. I was sobbing and felt terrible because I wanted to be strong for my mom,” Zoe said. “It’s devastating. Because when you think of it, it’s scary. Your whole life is completely changed. There’s no cure and you’re going to die of it.”
Like Pete Frates and his family, Zoe and Mary Bucuvalas weren’t going to just accept the diagnosis and give up without a fight. Zoe had been modeling for a streetwear line called The Label and they came up with the idea to design a sports bra to raise awareness and money for research.
“We just collaborated and decided we wanted to do something to give back,” Zoe says. “They came up with sports bras. It’s something that females wear. To me it’s something that’s empowering. It’s strong but sexy. It just made sense.”
Because of her relationship with the Frates family, and to honor Pete and his historic work on ALS awareness, they decided to emblazon the sports bras with Pete’s “PF3” logo – which symbolizes his initials and his BC baseball uniform number. They also added Mary’s initials and the word “FIGHT” in large letters.
“My mother is a fighter and Pete was certainly a fighter,” Zoe says. “It all just fell into place.”
The sports bras were an immediate hit. Several sizes sold out quickly. The ALS community took note. Zoe and Mary soon were getting messages from other ALS families thanking them for doing their part to raise awareness.
“It’s wonderful. It’s so much love,” Mary said. “It makes each day easier. I’m on Instagram and Facebook and people send you these beautiful messages. It makes my day easier.”
Mary grew up in Dorchester on Boston Street and worked as a manager at local Burger King restaurants for 23 years, retiring in 2010.
Zoe, a model, marketing professional and host on “Dirty Water TV,” was on the Pats cheer squad from 2013 to 2017. She was part of two Super Bowl title teams, including the historic 28-3 comeback over the Atlanta Falcons in 2017, and made friendships and relationships to last a lifetime.
Much like Pete Frates leveraged his friendships and connections with pro sports stars, Zoe is leaning on her vast network of sports and media professionals to raise awareness about the “FIGHT” sports bras. Proceeds from the sale could only go to one charity – the Pete Frates Foundation – she and Mary decided.
“My mom always taught me to give back,” Zoe said, recalling how her mother volunteered at food drives for Father Bill’s Place, a homeless shelter in Quincy. “So the first thing we thought was what can we do to help raise awareness and raise money. The only control we had was to turn a negative into a positive.”
The mother and daughter spend every day together, and Mary gets great joy out of carrying on Pete’s spirit.
“The young people, my heart goes out to them. I don’t want to see younger people like this,” Mary says. “But I’ve lived a good life.”
Pete’s brother, Andrew, has reached out to Zoe and given invaluable advice on how to build their own unique ALS awareness campaign.
“They’re a very warm, very kind family. We’re really honored that they wanted to work with us,” she said. “They’re so close to finding a cure. What we wanted to do was continue Pete’s efforts and the efforts of the Frates family.”
Dave Wedge is a New York Times bestselling author of six books, including “Ice Bucket Challenge: Pete Frates and the Fight Against ALS.”