Striking out ALS one pitch at a time

Pete Frates raising awareness for ALS at Fenway Park.
Pete Frates, alongside Tom Brady, at the annual ALS Awareness Game at Fenway Park (The Frates Family/PETEFRATES.COM)

By Emily Iannaconi
Medill Reports

As the Boston College players perch on the top step of the dugout, their arms touch the red flag with a white ribbon that looks like a baseball and has the words “Strike Out ALS” inscribed in blue lettering. No matter where or when they play, the Eagles support and raise awareness for ALS, in honor of their very own Pete Frates who was diagnosed with the disease in 2012. Frates inspired the Ice Bucket Challenge that swept the world for an eight week period in the summer of 2014 and has raised $115 million in the United States and $220 million globally for ALS research.

Amyotrophic lateral sclerosis is known more popularly as Lou Gehrig’s disease. It is a neurodegenerative illness that affects nerve cells in the brain and the spinal cord and causes a progressive degeneration of motor neurons, eventually leading to the demise of muscle function. When these motor neurons die, the ability of the brain to initiate and control muscle movement is lost.

“Pete is the captain of a team that nobody wants to be on,” said Pete’s father, John Frates.

About 6,000 people in the United States are diagnosed with ALS every year. The disease appears in two per 100,000 people and it is estimated that more than 20,000 Americans are living with ALS at a time. The average life expectancy averages about two to five years from the time of diagnosis. Ten percent survive 10 years and five percent will live 20 years or more.

Pete was diagnosed when he was 27 years old. John and Nancy Frates were told that their son had two years to live if they did nothing and five years if they did everything medically possible. Six years later, Frates is confined to a motorized wheelchair and can no longer speak, but he continues to raise awareness for ALS alongside his wife, Julie, and daughter, Lucy, through baseball.

Frates played outfield at BC from 2004-2007, serving as the team captain for the Maroon and Gold during his final season. He finished his career with 107 starts, a .228 average, 88 hits, 56 runs batted in, 11 home runs and 34 stolen bases. In 2012, head baseball coach Mike Gambino named Frates the director of baseball operations so that he could remain involved with the program.

“Pete turned immediately to his teammates and coaches all the way along his career for support and energy,” John said. “I didn’t really how intense the relationship was with Coach Gambino and his beloved Eagles until the diagnosis.”

As the director of operations, Pete travelled with the team. His dad quit his job working in finance to accompany his son to every game for three years. John said that Pete did not need much help at first.

“The only thing I remember is that he had trouble opening ketchup packets because he loved ketchup,” John said. “He probably had 20 of them compared to normal people who have two.”

As the first year rolled into the second, Pete became more compromised. He used a scooter to move around and needed assistance getting dressed. Because he did not know a lot about baseball, John said that his son asked him not to talk in the dugout. During the third year, Pete could no longer speak.

“He would use me to try to explain the best way to bunt to players,” John said. “It came full circle because at first I was told to shut my mouth and then the third year, I could do some mentoring on his behalf. It’s an amazing experience that I’m so blessed to have done with him.”

Gambino has been coaching the Eagles for eight years and he knows that his life and the lives of the young men on his teams have been forever changed by Pete.

“You take a group of kids that are 18 to 22 years old and try to teach them life lessons through sports,” Gambino said. “All of a sudden you turn around and see kids helping Pete on and off the bus, helping him put his jacket on and feeding him on the bench. People always talk about what we did for Pete, but I always say, it’s what Pete did for us.”

Seventy-five years after Gehrig famously told the world the he considered himself “the luckiest man on the face of the earth,” doctors were no closer to a cure. While Pete traveled, the Frates family tirelessly worked to raise awareness. On July 27, 2014, Pete’s former roommate poured the first bucket of ice on himself and challenged others to do the same.

Afterward, teams and individuals alike used social media to spread Pete’s message around the world. The sports information director for the Eagles who ran all social media accounts, Zanna Ollove, said that she believes the Ice Bucket Challenge gained popularity once Boston professional athletes joined the fight. By dumping buckets of ice cold water on themselves, participants raised awareness by challenging friends and family to complete the challenge. Celebrities including Julian Edelman, Matt Ryan, LeBron James, Jimmy Fallon, Mark Zuckerberg, Oprah Winfrey and Bill Gates were among the many participants. The movement raised $115 million in eight weeks.

“The trend took on a life of its own and I think people – famous or not – wanted to outdo each other so that helped keep the momentum going as the videos got crazier,” Ollove said.

“By raising all this awareness and money and the viral sensation, the real secondary mission [behind helping Pete] was to get ALS on the map so that people can identify it and don’t need to have it explained,” John said. “Everybody knows what it is now.”

Though John says that the family is in a constant state of worry, he remains incredibly proud of his son. “His legacy is forever cemented,” John said. “This young man really showed that in spite of the worst possible outcome, he can turn it into a positive. All he needed was reaching out to sports.”

Pete has received many awards, including being named one of Sports Illustrated’s “Inspiration of the Year” in 2014 and receiving the 2017 NCAA Inspiration Award. John however, is more concerned about his son’s legacy than singular moments in time.

“We have heroes in sports,” John said. “If it wasn’t for sports gravitating to a very simple act that is funny, compelling and contagious like dumping ice water over your head, none of this would have happened.”

John says that the past three years have been the most challenging. Pete now sleeps about 20 hours of the day. All the Frates ask is that people follow their story.

“We feel people’s thoughts and prayers, believe it or not” John said. It’s a sensation I’ve never felt before. To know that you’re loved while you’re still alive is an amazing gift. We all wish and think we’re loved, but Pete knows it.”

Photo at top: Pete Frates, alongside Tom Brady, at the annual ALS Awareness Game at Fenway Park (The Frates Family/PETEFRATES.COM)