Matthew DiIorio's mission lives on in Johnston and beyond

12th Annual Race for Matt & Grace scheduled for Sept. 18

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The path was a little bit easier while he was with them. Now that he’s gone, the journey is harder, but the mission has never been more important.

Sallyann DiIorio held a collage of photographs of her son.

Simultaneously, she both smiled and cried, looking down at Matthew’s face.

“It’s been back and forth,” she said. “It’s not as easy, but it’s important to keep going, because Matthew would want that.”

Matthew DiIorio passed away on the Fourth of July at age 40 after a long battle with Freidrich’s ataxia (FA), a debilitating neurodegenerative disorder.

Now, without Matthew, the fight continues.

“That was Matt’s wish, a number of years before he passed away,” said Michael Crawley, Matthew’s lifelong best friend. “That’s an honorable torch to carry. He continues to inspire us all. I was just lucky enough to be his best friend.”

Crawley has been helping the DiIorio family with their fundraising efforts for years.

On Saturday, Sept. 18, Rhode Island College will host the 12th Annual Race for Matt & Grace, a fundraiser for FARA (Fridrich’s Ataxia Research Alliance).

Crawley and the DiIorio’s have again organized the event, which immediately follows a golf tournament held last week in Matthew’s honor.

“People have been so generous and so forthcoming,” Sallyann said. “And it has been extraordinary from the beginning.”

More than 5,000 people in the United States suffer from FA, a rare, debilitating and progressive neurological disease, for which there is currently no cure. Members of FARA hope to change that.

Events like the Race for Matt & Grace raise money for research and awareness of the disease.

Matthew DiIorio, a Johnston native, was diagnosed with the illness in 1994, at the age of 13.

About four years later, FA began to take its toll.

In 2009, DiIorio became a tireless advocate for FARA. He and his family and friends worked hard to raise nearly $1 million over the past 11 years for FARA and others who suffer from FA.

“That’s the thing that has propelled me the most over the past six weeks,” Crawley said. “I wouldn’t allow my mind to believe Matt wouldn’t be here, even though I knew it was a possibility. It was and continues to be my honor to carry his mission forward.”

Donations can be made in Matt's memory to FARA in support of the Race for Matt and Grace. Registration begins at 8:30 a.m. on Saturday, Sept. 18. The 5K run, walk or roll is scheduled to begin at 10 a.m.

A party will be held immediately following the event at the Rhode Island College Rec Center.

More information can be found at www.curefa.org/rfmg (checks to FARA may be mailed to 533 W. Uwchlan Ave., Downingtown, PA 19335; reference RFMG).

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