On Sept. 26, for the sixth year, members of the community will rally behind the fight to cure Friedreich’s ataxia (FA) during the annual Race for Matt and Grace at Bryant University in Smithfield.
In the weeks leading up to the event, there will be several other opportunities to support the cause.
“We’re trying to do as many things as we can,” said Jack DiIorio, the father of Johnston native Matt DiIorio.
“We’ve exceeded expectations … we’re very lucky,” said Michael Crawley, a longtime friend of the DiIorios and co-chairman of the Race for Matt and Grace. “The bigger our committee gets, the bigger our network gets.”
Matt was diagnosed with FA in 1994. The neuromuscular, genetic disorder – which is debilitating, progressive, and at present has no cure – affects roughly one in 50,000 people in the United States.
Now in his early 30s, Matt attended Bryant University and graduated in 2004 with a degree in business communications. Throughout his experience, he has maintained a positive outlook and remained active. At Bryant, he managed the basketball team and joined the Delta Chi fraternity, and he worked for several years as a DJ after finishing school.
Matt participated in an FA clinical trial at the National Institutes of Health more than a decade ago, meeting Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Association (FARA). Prior to and after that experience, though, he and his family had largely faced FA alone.
Then, in 2010, Matt met Erin O’Neil at a Massachusetts event for FARA. She is now his oldest FA friend, and through her, he has met many others.
One of those introductions has been especially significant. Erin told Matt of the Race for Grace, a 5K held in Rhode Island in honor of Grace Hopkins. Grace, who lives with her family in Thompson, Conn., was diagnosed with FA in 2008, just before her 13th birthday.
Grace’s cousin, Katie, has family in the Ocean State, and began the 5K – previously held at Colt State Park – to support FARA and its mission.
Matt and his family subsequently became involved in the race. Then, Katie announced the name of the event had been changed, and it would now be known as the Race for Matt and Grace – an honor Matt said he was “humbled” by.
Last year’s Race for Matt and Grace drew approximately 400 participants, many more volunteers, and raised roughly $63,000 for FARA. To date, more than $155,000 has been raised for FARA.
This year, several special events have been held and scheduled in advance of the main gathering in hopes of generating even more.
“More and more people are hearing about it,” Crawley said.
“Its growing and growing,” Gerry Mirabile said the volunteer committee, which now numbers between 15 and 20 people and is eying events such as a golf tournament in the future.
The events began with a kickoff celebration at McShawn’s Pub in Cranston on June 2, which raised $3,000. On July 15, Pizzeria Uno on Putnam Pike in Smithfield donated a portion of lunchtime sales, and b.good in Garden City donated a portion of dinnertime sales on July 21.
On July 31, the group Funny 4 Funds hosted a Comedy Night to benefit the cause at the Kelley-Gazzerro VFW Post on Plainfield Pike.
Coming up, several other local businesses are hosting special donation hours for the cause. They include:
Pinkberry, Garden City, Aug. 15, 10 a.m. to 11 p.m.
Chipotle, Garden City, Aug. 25, 5 p.m. to 9 p.m.
Flatbread Pizza, 161 Cushing St., Providence, Dec. 29, 5:30 p.m.
More information on the events is available by contacing Crawley at email@example.com. The gatherings are sponsored by FARA, which has received the top rating of four stars from the website Charity Navigator (charitynavigator.org).
For Crawley and the DiIorios, supporting FARA goes beyond working toward a cure for Matt. The organization, they say, has been an invaluable resource, and its research efforts have led to significant progress. It relies on events like the Race for Matt and Grace to fund its work, and last year more than $1 million was raised across the country.
“Our feelings about FARA haven’t changed. They’re in business to go out of business,” Crawley said. “It makes us feel good and proud and confident.”
“These people are amazing,” said Sally Ann DiIorio, Matt’s mother. “There’s a lot of good people out there … that’s what keeps us going.”
Being there for others facing FA has also been immensely rewarding.
“You don’t know where to turn with something that’s so rare … we can help them,” Jack DiIorio said.
For more information or to register for the Race for Matt and Grace, visit www.curefa.org. WPRI’s Kelly Sullivan will serve as the emcee of this year’s event.