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. Continued...