To Pete Frates, this is the best time in history to have amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.
“It’s kind of a weird thing to say, but just based on the fact that we’re getting better every day in terms of researching and finding things, there’s no better time to get diagnosed than now,” said Frates, whose doctors confirmed what he already knew when they gave the formal diagnosis in March. “That’s what keeps me going every day, that I know there are really smart, really great people out there doing great things, and that it’s 2012 and not 1939, when Lou Gehrig was diagnosed and made it public.”
That any 27-year-old should contract ALS is tragic. In the case of the former Boston College baseball captain from Beverly, what followed has been inspiring.
Calling on his own energy and that of family and friends, Frates is at the center of a crusade to raise money and awareness to beat the disease, which affects the nerve cells that control voluntary muscle movement. In most cases the disease has no known cause, and it is fatal; on average, patients are given less than three years to live. In Frates’s words, it is “one of the most devastating and cruel diseases out there.” Still, he said, it remains a disease that many people know little about.
He wants to change that.
On Wednesday, there is a 3-on-3 basketball tournament in Dorchester to benefit the Pete Frates #3 Fund, and later this fall there are ALS Association walks in Burlington, Vt., and Boston, a 5K road race in Cambridge to benefit Prize4Life , and a Boston College-Notre Dame football pregame party also benefiting the Pete Frates #3 Fund. More can be found online at Petefrates.com, where people can donate directly to the fund that helps Frates defray his living expenses. The site also includes links to other ALS organizations, and to a flash mob video from a Woburn gym that is also aimed at raising money and awareness.
There have been fund-raisers at the Harpoon Brewery and Jerry Remy’s Sports Bar & Grill in Boston, a Wiffleball tournament in Beverly, fishing tournament in Nantucket, and golf tournament in Andover. Those were in addition to the $100-per-ticket family-run fund-raiser at the Danversport Yacht Club in Beverly that drew about 850 people..
“It speaks to the type of man Pete is, the character he has, and the love that people have for him,” said Mike Pitt, a friend since high school who is one of the organizers of the flash mob video, shot with 130 people at Athletic Evolution in Woburn.
“He really inspires a lot of people, including our staff,” said Dr. Merit Cudkowicz, chief of neurology at Massachusetts General Hospital and Frates’s physician. “He’s really shared the passion that this is important for advancing science.”
Frates has appeared on the “Charlie Rose Show,” been featured on ESPN.com, and thrown out the first pitches at ALS Awareness Day at Fenway Park, and at the Old Time Baseball Game, a charity event last month in Cambridge. Boston College baseball hosted an ALS Awareness Game, and the Beverly Little League City Series was dedicated to Frates and his mission.
“We have a big calendar here at the house that we put all of the events and the things I go to, doctor’s appointments,” explained Frates. “It’s almost like back in high school, when all my hockey practices and baseball games went on the big board. It’s incredible. My support network of family and friends are the most unbelievable people in the world.”
That is the kind of enthusiastic statement many people make about Frates, who attended St. John’s Prep in Danvers before BC, where he captained the 2007 baseball team. He played professional baseball in Germany before moving back to Boston and a life as a young urban professional who worked out with a morning boot camp group, ran in road races, and played baseball in the Intercity League.
All of those communities have stepped forward, said his family, including those in Germany. One friend climbed three mountains in the United Kingdom to raise money for Frates.
“It’s been overwhelming,” said Art Cronin, one of two uncles who serves as the family’s contact for those who run fund-raisers. “It took me about a month to figure out Pete’s universe, his network of friends.”
Since he was a young boy, he has never been one to have fleeting friendships, says his mom, Nancy. She recalled that at the Danversport event, he stood and seemingly thanked everyone in the room — those from youth hockey in Peabody, and from middle school, high school, college, and work, and all the other people in his life.
“What Pete’s doing is educating a whole generation to this disease,” Nancy Frate s said, noting that most remember Lou Gehrig as a historical figure at best. “He is galvanizing a whole new generation to understand this disease, and to the reality that they could be walking down the street and this could happen to them, to anyone.”
While he was not formally diagnosed until March, Frates first noticed symptoms during the 2011 Intercity League season. Back then, he was working as a group insurance salesman for Humana, living in South Boston, and playing for the Lexington Blue Sox.
In a game last August, a pitched ball hit Frates on his hand, near the wrist. His slow recovery — a year later it has still not healed — was the trigger that got him to the doctor and got him researching it online, but there were other signs. While he was in great shape, there was twitching in his upper arms following races and workouts, and his batting average dropped more than 100 points from the previous year.
“There was one game I went 0-for-4, four groundouts with four broken bats,” he said. “That never happened in my life.”
He felt he was losing speed, and shortly after the season his energy level started dropping.
Because his sore hand led him to a series of doctors and the eventual diagnosis of the disease (ALS requires a lengthy diagnosis), Frates said, “Baseball might end up saving my life.”
These days, he lives in an addition at his parents’ Beverly home. He volunteers as director of baseball operations at Boston College, and collects disability insurance. Coincidentally, he noted, “I’m actually on the [insurance] product I sold.”
Among the things covered by the Pete Frates #3 Fund are the experimental drugs that he believes have slowed the progress of the disease.
He has followed news about ALS, which in recent years has been hopeful, as genetic research has yielded new evidence and clues.
“I’m optimistic that people today with ALS will have another drug, or two, that could slow their illness down,” said Cudkowicz, who acknowledged that determining how to stop or prevent it may take longer.
While social media sites have helped people spread the word about Frates and helped with fund-raising, BC baseball coach Mike Gambino thinks the crusade would have happened with or without them.
“I attribute it to how special a kid Pete is, how special of a family the Frates family is, and also I think, you’re attracted to people like you,” Gambino said. “His makeup is so special. He is such a great kid, always trying to help people. He cared so much for everybody around him, and those are the kind of people he’s surrounded himself with. It’s a tribute to Pete and his family and a tribute to the people around him that as soon as this happened, they just rallied in all these different social circles. “If you took social media out of it, everyone would have figured out a different way to spread the news.”