Playing a part in finding cure for Fragile X
There will be a three-on-three basketball tournament at Buckingham, Browne & Nichols on Saturday, May 30, and it’s all about Patrick’s Pals. It’s about trying to get help, not for Patrick in particular, but for research that one day might, if funding levels increase and more answers are found, eliminate the need for a Patrick’s Pals tournament.
“We’re sort of the little engine that could,’’ said Patrick’s dad, Jim Vershbow, his days focused on his son, his family, and searching endlessly for answers. “We’re trying to get in everyone’s consciousness, I guess you’d say.’’
Patrick is 22, has significant learning disabilities, and his pals, including family, friends, and three of his father’s high school buddies, have been running the tournament at BB&N in Patrick’s name for nearly 20 years. Patrick was born with Fragile X Syndrome, a genetic disease that is the most common inherited cause of autism.
Patrick has been to a couple of the tournaments that carry his name, but being there is difficult on him. Because of his Fragile X, it can be overwhelming, a sensory overload. He has trouble coping with crowds and noise, interpreting social cues and customs. The usual fun and cacophony of a basketball tournament, a joy for most of us, can be painful and intimidating for someone with Fragile X Syndrome.
“He’s gotten a lot better,’’ said his father. “But if you go to shake his hand, he’ll back away. If you try to put your arm around him, he’ll back away. It really isn’t that he’s shy. It’s just his trouble interpreting the whole sensory thing.’’
Fragile X is rare and not as highly publicized as many other better-known genetic diseases that attract media interest and generate richer revenue streams of giving. The world of the ailing doesn’t prioritize. There is no Find Help 101 manual for funding charities or what makes the public wake up one day and pour out its heart, empty its wallet, join a bike-a-thon for its cure. Gifts that pour down torrential cash from the heavens like the Ice Bucket Challenge are as rare as cures themselves.
Which is why Vershbow and wife, Pamela, are grateful for the will and determination of Katie Clapp and Michael Tranfaglia, who in 1994 established the FRAXA Research Foundation, aimed at finding a cure for Fragile X. Husband and wife, Clapp and Tranfaglia also have a son, Andy, age 25, who has Fragile X. And from the Small World department: Vershbow and Clapp both attended BB&N in the 1970s.
“Really ironic,’’ noted Vershbow, who graduated from BB&N in 1979, a year following Clapp. “We weren’t on one another’s radar, and then one day, boom, my wife and I are in this daze trying to figure out where to get [Patrick] help, and here’s Katie at this FRAXA event. What Katie and Mike have done is amazing — 25 years ago, no one knew of Fragile X. Information was scarce, research scarcer. As parents, Katie and Mike wanted answers, and in ’94 they established FRAXA . . . to find a cure.’’
Over the course of 20 years, in part because of tournaments such as Patrick’s Pals, FRAXA has raised upward of $30 million. Because of that funding, noted Vershbow, now a FRAXA board member, inroads to a cure have been made. The disease is better understood, public awareness heightened, medications developed to aid not only FRAXA patients but others with similar disabilities.
Among FRAXA’s helpful funding boosts of late, said Vershbow, was a $90,000 grant awarded by the Boston Bruins Foundation. Bob Sweeney, the foundation’s executive director, on Thursday will present FRAXA with the first half of that grant, with the other $45,000 pledged for next year.
The presentation will take place at the Shared Living Collaborative’s Gateway Farm in Amesbury, a farm and equestrian center where children and adults with Fragile X, autism, and other disabilities often work. Little surprise that the Bruins will make their gift away from the spotlight. They are somewhat more public about their generosity today than, say, 20 or 25 years ago, but for decades they have chosen to play the lowest key on the grand publicity piano.
Meanwhile, Vershbow and his high school pals, Jon Pressman, Steve Savarese, and Bill Rome, along with buddies Jim Marks and Scott Katz, have the 19th Patrick’s Pals tournament to stage, beginning at 9 a.m. on Saturday. All the money will go directly to FRAXA research. Each of the 32 teams will pay the $200 entry free and a silent auction should net a few more thousand bucks. It’s not gigantic money, but every dollar is vital, and like success begets success, giving so often begets giving.
Hopefully, there is a cure out there. Even if everyone involved in Saturday’s basketball tournament didn’t believe there was, it’s a good bet they would be out there anyway. There are some 100,000 people in the US with Fragile X, with untold scores of parents and siblings, aunts and uncles and friends and, let’s hope, gym rats with game, who want to know they can do something to help. Caring is never fragile.
A good day, when his son is happiest, said Vershbow, is when Patrick is at the computer, listening to music or watching a video. True of many with Fragile X, one of Patrick’s symptoms is perseveration, leading him to repeat words or actions incessantly, listen to or watch the same thing over and over again.
“When he’s really into a song, it gets ingrained in all our heads,’’ said Jim Vershbow, talking over the phone from the family’s home in Watertown. “At the moment it’s Michael Jackson’s ‘Beat It.’ He’s watching that and some spoof online, ‘Eat It’ by Weird Al Yankovic. You can tell Patrick’s happy, when he’s yelling, screaming . . . those are his sounds of happiness. It may not sound to everyone like a laugh, but it’s his laugh, he’s happy, it’s good.’’
They’re playing basketball Saturday, four courts full, at BB&N. They are Patrick’s Pals. They will be happy to be there, happy if you drop in, even happier if one day Fragile X is forgotten and there is no reason to play at all.