BEVERLY — Pete Frates, a Beverly resident whose inspirational battle against ALS helped raise millions of dollars to combat the incurable disease, died on Monday, his family announced. He was 34.
Frates was diagnosed with amyotrophic lateral sclerosis, known as Lou Gehrig's disease, on March 13, 2012, at the age of 27. In 2014 he inspired the Ice Bucket Challenge, a social media phenomenon that went on to raise more than $200 million for ALS research and continues to this day. The stunning reach of the Ice Bucket Challenge made Frates the public face of ALS and recognizable worldwide.
John Peter Frates III was born at Beverly Hospital on Dec. 28, 1984, to John and Nancy Frates. He developed into a top athlete, playing football, hockey and baseball at St. John's Prep and becoming captain of the baseball team at Boston College. As a junior, Frates hit a home run at Fenway Park to help Boston College win the Beanpot Championship.
After graduating from BC, Frates played baseball in Germany for a year before returning home and getting a job in the insurance industry. On the day he was diagnosed with ALS, according to the book "The Ice Bucket Challenge: Pete Frates and the Fight Against ALS," he gathered his family at their Beverly home and said, "What an amazing opportunity we now have to change the world."
"I'm going to change the face of this unacceptable situation of ALS," Frates said, according to the book. "We're going to move the needle and raise money to fight."
ALS is a progressive disease that attacks nerve cells in the brain and spinal cord, leading to loss of muscle movement and the ability to speak, eat, move and breathe. The life expectancy of people with ALS is two to five years.
Frates went from a seemingly indestructible athlete to using a motorized wheelchair. Eventually, he would require a speech-generating device to talk and eye-gaze technology to operate a computer. But he was determined to to live his life with purpose and to raise awareness of ALS, which affects about 16,000 people at any given time, according to the ALS Association.
Frates began assembling a team of family and friends, dubbed Team Frate Train, to spread the word about ALS and advocate for funding and research. They started the Pete Frates #3 Fund to help with the cost of his care and organized charity bike rides, baseball games, pub crawls and polar plunges.
Frates accepted an award from the ALS Therapy Development Institute in Boston and traveled to Maryland to speak at a U.S. Food and Drug Administration public hearing on the issue.
In June 2013, he married Julie Kowalik of Marblehead, whom he began dating before his diagnosis. His brother, Andrew, and friend Tommy Haugh held onto Pete's elbows as he stood at the altar, according to "The Ice Bucket Challenge." Instead of using his wheelchair, Frates walked down the aisle with his bride and out of the church.
When Frates saw an online video of someone dumping a bucket of ice water on their head in support of a relative with ALS, he and his supporters began spreading the message on social media and asking others to do the same. The concept of the Ice Bucket Challenge had been around for awhile, but had never been associated with a single cause. Once Frates and his network began promoting it to benefit ALS research, the Ice Bucket Challenge became an international phenomenon.
According to the ALS Association, $115 million in donations poured in to the organization during an eight-week period in 2014 through the Ice Bucket Challenge. A long list of celebrities accepted the challenge, including former President George W. Bush, Oprah Winfrey, Taylor Swift and Bill Gates. The association's research budget has tripled since then, and five new genes that could spur new therapies have been discovered. It has been estimated than more than $220 million has been donated to ALS research due to the Ice Bucket Challenge.
Suddenly, Pete Frates, the former star athlete turned ALS patient, was famous. He was nominated for Time magazine's Person of the Year in 2015. Sports Illustrated named him "Inspiration of the Year." The National Collegiate Athletic Association gave him its Inspiration Award.
The sports world, in particular, responded to the cause of the former athlete. Frates was honored on the field before a World Series game in Kansas City. More than 68,000 fans sang "Happy Birthday" to him at a New England Patriots game. The Red Sox signed him to a lifetime contract and presented him with a World Series ring. Boston Bruins star Patrice Bergeron invited him to watch a game from his suite at TD Garden. His alma maters, St. John's Prep and Boston College, retired his No. 3 jersey and named athletic facilities or fields after him.
Closer to home, hundreds of people turned out for Pete's Plunge at Good Harbor Beach in Gloucester and for the Pete Frates 5K at Lynch Park in Beverly. Endicott College named a new dormitory Peter Frates Hall. A park in Pete's neighborhood in Beverly was renovated into a new handicapped-accessible park and christened Pete's Park.
In the meantime, the disease and its devastating effects continued to progress. Frates underwent a permanent tracheostomy that allowed him to breathe through a ventilator. A false report said that he had died. Frates responded to the rumors by posted a video to Twitter of himself lying in a hospital bed while listening to Pearl Jam's "Alive."
In an article for Bleacher Report on the 75th anniversary of Lou Gehrig's famous farewell address at Yankee Stadium, Frates wrote, "What if you woke up today and someone told you that you have two to five years to live? How would you handle the news? What if they told you that during those two to five years you would lose control of your extremities and your ability to speak, eat and breathe?"
Frates relied on the devotion of his family to care for him at home on Landers Street, where he lived with his wife, their daughter Lucy, and his parents. To help with medical bills that reached as high as $95,000 per month, the ALS Association began the Pete Frates Home Health Initiative, which aims to help ALS patients whose insurance won't cover skilled care at home.
"What we're seeing with Pete, in the midst of this absolutely devastating battle, is his personal strength and resolve," his father, John, said in 2017. "I'm very proud to be his dad and of everything that he's done in the universe."
In December 2016, more than 100 friends and family members, including the entire Boston College baseball team, gathered at the Frates home for a ceremony honoring him with the NCAA Inspiration Award. NCAA president Mark Emmert traveled from Indianapolis to present the award.
"There are very, very few people that have touched as many lives as Pete has," Emmert said.
Staff writer Paul Leighton can be reached at 978-338-2675 or firstname.lastname@example.org.