`The best medicine': Joint birthday party, comedy night to support Freidrich's ataxia research

By Daniel Kittredge
Posted 5/18/16

Michael Crawley is just a year younger than his close friend Matt DiIorio. As children, the two played baseball together. Michael fondly recalls one particular game in which the opposing team's outfielders - thinking a long hit was

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`The best medicine': Joint birthday party, comedy night to support Freidrich's ataxia research

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Michael Crawley is just a year younger than his close friend Matt DiIorio. As children, the two played baseball together.

Michael fondly recalls one particular game in which the opposing team’s outfielders – thinking a long hit was unlikely – were playing in when Matt stepped to the plate. He quickly proved the fielders wrong.

“He knocked a shot over everybody for a triple,” Michael said. “It was a pretty cool moment.”

Matt’s story has been one of beating the odds. In 1994, he was diagnosed with Friedreich’s ataxia (FA), a neuromuscular, genetic disorder that is debilitating, progressive, and currently has no cure. Doctors at the time said his odds of living past high school were slim.

Matt went on to attend Bryant University, graduating in 2004 with a degree in business communications. He managed the basketball team and became a member of the Delta Chi fraternity. For several years after, he worked as a DJ.

Matt and his family have also become highly active in supporting research to find a cure for FA, which affects roughly one in every 50,000 Americans. Through the annual Race for Matt and Grace – which marked its sixth year in 2015 – and other events, they have raised more than $250,000 for the Friedreich’s Ataxia Research Association (FARA).

Early next month, that effort will continue as loved ones and supporters gather to celebrate Matt’s 35th birthday.

The event, a Funny 4 Funds Comedy Show for FARA, is scheduled for Friday, June 3, at the Crestwood Country Club at 90 Wheeler St. in Rehoboth, Mass.

The June 3 festivities will include dinner, the comedy show, a live auction, and a birthday cake. Doors open at 6:30 p.m., and the show starts at 8 p.m.

Tickets are $35, and can be purchased online at curefa.org/MJD35. Organizers ask tickets be purchased before Friday, May 27, so that the venue can be given an accurate headcount. For more information, call Crawley at 401-439-8103 or Jack DiIorio at 401-486-2229.

Last year’s comedy night, held at the Kelley-Gazzerro VFW Post on the Cranston-Johnston line, was a major success, raising nearly $6,000 – more than any event the group has held outside the Race for Matt and Grace. As planning began for Matt’s 35th birthday, he decided to hold the festivities in conjunction with this year’s show.

Michael said became connected with Bill Simas, one of the founders of Funny 4 Funds, through a friend. He spoke glowingly of the company, which helps raise funds for a range of non-profit entities.

“I have only great things to say about their company,” he said. “These guys are great, and they work for any group.”

Matt’s upcoming milestone is a significant one. Michael noted that for those with FA, the “prognosis for living up to and beyond 35 … is not great.”

Yet Matt continues to inspire others with his positive spirit and enthusiasm. He remains passionate about music and sports, and his love for people has not diminished.

“We try to keep it positive, and Matt helps us do this,” Michael said.

Matt’s mother, Sally Ann DiIorio, said he is dealing with shoulder, neck, and back pain, but is doing well. At a recent appointment at Massachusetts General Hospital, doctors reported no major changes in his condition since last year.

“His spirits are up. He is still involved in all kinds of things,” Sally Ann said. “We have our bumps in the road ... but we pick ourselves back up.”

One recent highlight was a trip to Philadelphia to take part in a professional photo shoot for Pfizer, which is assisting in FA research efforts.

“It was so cool,” Sally Ann said. “It was a thrill for him.”

Beyond celebrating Matt’s birthday, the June 3 event will provide another opportunity to bring together what Michael called an “incredible group of people” who have lent their support over the years. The money raised locally for FARA, he said, represents a significant portion of the organization’s grassroots fundraising, and 100 percent of proceeds are directed toward research.

The festivities will also draw others from the FA community, people with whom Matt and his loved ones have formed close bonds.

When Matt was first diagnosed, Michael said, “We didn’t know anybody, we didn’t know anything about this disease. Now we have this army of supporters … FARA has a ton of things in the pipeline. Until that time, the best medicine he has is through this community.”

For more information on FARA and its work, visit curefa.org.

FAMILY:

Matt DiIorio, front, gathers with family members and friends ahead of last year’s Race for Matt and Grace. Also pictured, from left, are Sally Ann DiIorio, Michael Crawley, Gerry Mirabile and Jack DiIorio. (Herald file photo)

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