FA advocate, Johnston High School graduate, lost at age 40

Matthew DiIorio was "an alumni of Johnston Schools and was a major supporter of research for Freidrich’s ataxia (FA)"


Johnston has lost a fighter and a compassionate advocate.

“The Johnston community experienced a loss as Matthew DiIorio passed away on July Fourth at age 40,” said Johnston Schools Superintendent Dr. Bernard DiLullo Jr. on Tuesday night, as he wrapped up his year-end annual report.

“Matthew is an alumni of Johnston Schools and was a major supporter of research for Freidrich’s ataxia (FA), a debilitating neurodegenerative disorder, that claimed Matthew’s life,” DiLullo announced. “Matthew was the son of Jack and Sallyann DiIorio, who cared for and supported Matthew so well throughout his life. His mother, Sallyann has taught as a substitute teacher in the Johnston Public Schools for many years.”

On Monday, men and women dressed in black lined George Waterman Road, outside Our Lady of Grace Church, to celebrate the life of Matthew DiIorio. A Johnston Police officer helped people cross the busy road.

“Matthew’s funeral was held yesterday at Our Lady of Grace Church,” DiLullo informed the School Committee. “The funeral was attended by so many family, friends and supporters that all couldn’t fit into the church. This was quite a tribute to a brave, positive and dynamic young man who touched so many lives throughout his life. Our condolences to his fine family.”

Friedreich’s ataxia (FA) is a neuro-muscular, genetic disorder that affects one in roughly 50,000 people in the United States.

The disease is debilitating, progressive and has no cure.

“Throughout his life, Matthew J. Di Iorio was a powerful inspiration and source of hope for those who knew him,” according to his obituary. “Even though he needed support in almost every aspect of life, he had a community of people who loved him unconditionally because of who he was. In the midst of great suffering and hardship, he showed others how to live joyously. His positive, can-do attitude did not allow pity to become part of his world. Matt gave us all a sense of purpose and connection.”

Matt DiIorio, a Johnston native, was diagnosed with the illness in 1994.

“Diagnosed at age 13, Friedreich's ataxia (FA) began to manifest itself in a significant way about four years later,” according to his obituary. “Despite the symptoms that tried to slow him down, Matt's life became more exciting and adventurous as the years continued. His love of travel took him coast to coast for sports tournaments, golf vacations, and to Las Vegas multiple times. Matt especially enjoyed the summer weekends spent on the water in Warwick and Narragansett.”

Matt and his family felt alone in their fight against the disease, at first. Then they eventually met allies, and found strength in the experiences of others who faced the same extreme challenge.

”In 2009, Matt became a tireless advocate for the Friedreich's Ataxia Research Alliance (FARA) and those who also have FA,” according to his obituary. “Although it changed his life, he never expected to be thought of as a patient. He would confidently say, ‘I have FA, but FA doesn't have me.’ Inspired by others with FA, he decided to raise funds and awareness to find a cure. Together with friends, he helped start the Race for Matt and Grace. His community of supporters have raised close to a million dollars to find a treatment and cure for the more than 6,000 Americans who suffer from this disease.”

For Matt, connecting with the FA community was life changing. He worked to give guidance and support to others dealing with the condition – particularly younger children – and attended countless events, including fundraisers and FARA symposiums.

“Matt found ways to stay in the game and on the dance floor,” according to his obituary. “When he wasn't the party's DJ, he coached baseball or cheered on his favorite team. Through A Wish Come True he met the entire 1999 New York Yankees and later, in 2008, hung out with Super Bowl MVP Eli Manning and the owners of the New York Giants.”

To all who met him, Matt DiIorio was an inspiration.

“His friends always marveled at Matt's desire to do everything without regret and without judgment,” according to his obituary. “In high school, peers showed their respect and admiration by crowning him king of the prom, the Christmas ball, and homecoming. Always wanting to look his best, Matt enjoyed fashion. Armani Exchange and I.N.C. were his favorites, but his smile and charisma overshadowed his attire.”

A lifelong resident of Rhode Island, Matt DiIorio was a Johnston High and Bryant University graduate.

“Some of his proudest moments took place while managing the men's basketball team at both schools,” according to his obituary. “In college, he was a member of the Delta Chi fraternity while completing a bachelor's degree in communications.”

Despite the challenges presented by FA, Matt DiIorio refused to surrender.

“At 40 years old Matt passed away on the Fourth of July, 2021 due to complications from FA,” according to his obituary. “True to form, he died as he lived, spending time on vacation with his family in Sun Valley, Idaho.”

His family expressed gratitude to those who helped make life a little bit easier.

“The DiIorio Family appreciates the people who supported Matt with countless acts of kindness and love throughout his life,” according to his obituary. “The family also extends their heartfelt gratitude to the medical professionals who treated and cared for him.”

A Mass of Christian Burial was held at 11 a.m. Monday, July 12, at Our Lady of Grace Catholic Church.

A private burial followed at St. Ann's Cemetery in Cranston.

In lieu of flowers, the family requests donations be made in Matt's memory to FARA in support of the Race for Matt and Grace.

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).

Cranston’s Woodlawn-Gattone-Remington Funeral Home handled the arrangements.

Memories and condolences can be shared at WoodlawnGattone.com, and details regarding tree-plantings in Matt DiIorio’s memory can also be found online.

To begin Matt DiIorio’s obituary, his family asked a pair of questions. The answers, for most of us, cast a shining light on the legacy DiIorio will undoubtedly leave behind.

“How many of your friends would carry you up a flight of stairs or onto an airplane?” His obituary asks. “When was the last time you were judged not by your appearance, but by your character?”

The Johnston School Committee adjourned Tuesday night’s meeting in Matt DiIorio's memory.