The sense of community at the heart of the annual Race for Matt and Grace was on display this past Monday night.
Jack and Sallyann DiIorio opened their Johnston home to a board meeting, attended by only some of the several dedicated members. Each discussed their contributions to the fundraising efforts set on finding a cure for Friedrich’s ataxia, a genetic, degenerative neuromuscular disorder.
FA affects the two namesakes of the organization, Matt DiIorio and Grace Hopkins. Matt found out he had FA in 1994, while Grace, a girl from Connecticut, was diagnosed in 2008. FA affects 15,000 people worldwide and about one in every 50,000 in the United States.
The race is going on its 10th year now, and Matt’s father, Jack, said that family, friends and the town have been “unbelievably supportive” along the way. That teamwork showed throughout the course of the board’s interview with the Sun Rise.
Bill Beatini, the head of the North Providence Rotary Club, has helped host fundraisers including a recent comedy night. Marissa Crawley explored the current Pampered Chef online fundraiser and future events. Vin LaFazia, Johnston’s former recreation head, was integral in starting a golf tournament, while Michael Westell has helped bring in thousands with last year’s first-ever beer tasting.
Combined, these efforts have brought in more than $100,000 over each of the past three years for the Friedrich’s Ataxia Research Alliance, or FARA.
“It’s just been a great experience,” Jack DiIorio said. “When Matt was first diagnosed, it was a very lonely feeling in not knowing where to go and what to do. But it’s been great [to support FARA].”
Involvement in the Race has been special for Crawley, who met her husband and co-chair of the organization, Michael, at a pizza event several years ago. Michael grew up with Matt, playing baseball together and becoming close in high school.
Right now, the group is running a Pampered Chef fundraiser that continues through mid-April. Those who want to participate can visit pamperedchef.com/party/mattdiiorio, and 30 percent of proceeds will go toward FA research.
“We do a lot of recurring events, but then we try to switch it up and do some new stuff, like the Pampered Chef, the Facebook event that we’re having right now that was actually Matt’s idea,” Crawley said. “He created that whole event, so that’s one that we have going on right now.”
Family involvement goes well beyond the DiIorios, too. Crawley got Beatini, her father, involved in the group, and he brought over previous fundraising experience from his time running a Boys and Girls Club. He said he first went to a couple of events and immediately fell in love with the DiIorios.
His position as the head of the North Providence Rotary, he said, allows him to hold a couple of events each year where a charity is designated. The most recent fundraiser the Rotary held was a comedy night at the Knights of Columbus in North Providence on March 8. Beatini said they raised about $2,500 with the aid of comics John Perrotta and Doreen Collins, among others.
“The comedians, everybody had a really great time,” Beatini said. “I was a little worried about the attendance, but we had a good crowd of over 100 people. It was really good, and one of the things about the group, and I brag about it to my rotary. A relatively small group, grassroots, it’s unheard of the kind of money they’re raising. There’s a lot of passion there with these events. It’s really incredible.”
The next in-person event on the slate is a guest bartender night at Bar 101, which will take place on a Thursday at the end of June. Crawley said they are still waiting on confirmation from their two guest bartenders. Tips and a portion of food sales will be donated to FARA.
That’s the lead-up, though, to the two highest-profile events on the calendar. This year’s Race for Matt and Grace Golf Tournament will be held at the Connecticut National Golf Club in Putman, Connecticut, on Saturday, Aug. 17.
Then, on Sept. 21 at Rhode Island College, the Race for Matt and Grace will reach its milestone 10th run. All those years of holding the 5K have introduced the DiIorios to quite a few people from across the region, and it has only added to their already vast pool of supporters. That includes Alex Fielding, a young man with FA from Rhode Island, who has become a presence at the race and golf tournament.
“We’ve also kind of created a community of people with FA that come up from Massachusetts and New Hampshire that come to the events,” Crawley said. “So they get to be together and see each other more often than the once a year that they would normally.”
They’re looking to create more traditions as well. Michael Westell arranged the group’s first beer tasting at the Guild in Pawtucket. The event was a success, raising $3,000 in one night as the brewery played host to more than 100 attendees.
“It gives us an opportunity to kind of relax, wind down from the race and have an event where everyone can come out and just have a good time and raise some money. We are, that’s the plan at least,” Westell said. “It’s definitely good. We had in it in the actual brewery, and that allowed us the opportunity to have the whole space to ourselves.”
After a couple of years of conflicting schedules, the DiIorios were able to present a flag from the inaugural golf tournament in 2017 to the Johnston Police Department on Monday night. Patrolman Derek Parascandolo, along with his children Christian and Luca, accepted the framed flag from Jack and Matt.
The meeting brought together members of the Johnston police, business and recreation community, to name a few, and that’s just a small example of the organization’s reach. That camaraderie and support has helped the Race for Matt and Grace continue to grow.
“It’s an extended family and it just keeps getting bigger, which is great,” Jack DiIorio said.