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

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


Johnston lost a fighter and a compassionate lawyer.

“The Johnston Church suffered a loss when Matthew DiIorio passed away on July 4th at the age of 40,” said Dr. Bernard DiLullo Jr., superintendent of the Johnston Schools, on Tuesday evening as he finalized his year-end annual report.

“Matthew is an alumni of the Johnston Schools and has been a major contributor to research on Friedrich’s Ataxia (FA), a debilitating neurodegenerative disease that cost Matthews life,” said DiLullo. “Matthew was the son of Jack and Sallyann DiIorio, who have looked after and supported Matthew so well throughout his life. His mother Sallyann has been teaching as a substitute teacher at the Johnston Public Schools for many years. “

On Monday men and women celebrated the life of Matthew DiIorio on black-lined George Waterman Road in front of Our Lady of Grace Church. A Johnston police officer helped people cross the busy street.

“Matthew’s funeral was held at Our Lady of Grace Church yesterday,” DiLullo told the school committee. “So many family members, friends, and supporters attended the funeral that not all of them would fit into the church. This was a tribute to a brave, positive and dynamic young man who touched so many lives all his life. Our condolences go to his fine family. “

Friedreich’s ataxia (FA) is a neuromuscular genetic disorder that affects one in approximately 50,000 people in the United States.

The disease is debilitating, progressive, and cannot be cured.

“Matthew J. Di Iorio has been a powerful inspiration and source of hope to those who knew him all his life,” the obituary reads. “Although he needed support in almost all areas of life, he had a community of people who loved him unconditionally because he was. In the midst of great suffering and privation, he showed others how to live joyfully. His positive, hands-on attitude did not let compassion become part of his world. Matt gave us all a sense of purpose and connectedness. “

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

“Diagnosed at the age of 13, Friedreich’s Ataxia (FA) began to manifest itself clearly about four years later,” says his obituary. “Despite the symptoms that tried to hold him back, Matt’s life became more and more exciting and adventurous over the years. His wanderlust led him to sports tournaments, golf vacations and several times to Las Vegas. Matt particularly enjoyed the summer weekends on the water in Warwick and Narragansett. “

Matt and his family initially felt alone in their battle with the disease. Then they eventually met allies and found strength in the experiences of others facing the same extreme challenge.

“In 2009, Matt became a tireless advocate for Friedreich’s Ataxia Research Alliance (FARA) and those who have FA,” he said in his obituary. “Although it changed his life, he never expected to be seen 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 support has raised nearly a million dollars to find treatment and cure for the more than 6,000 Americans who have the disease. “

For Matt, connecting with the FA community was life changing. He worked to provide guidance and support to others involved with the disease – especially younger children – and participated in a myriad of events, including fundraisers and FARA symposia.

“Matt found ways to stay in the game and on the dance floor,” he says in his obituary. “When he wasn’t the party DJ, he was training baseball or cheering on his favorite team. He met the entire New York Yankees from 1999 through A Wish Come True and was dating Super Bowl MVP Eli Manning and the owners of the New York Giants in 2008.

Matt DiIorio was an inspiration to everyone who met him.

“His friends always marveled at Matt’s desire to do everything without regret and without judgment,” says his obituary. “In high school, peers showed their respect and admiration by crowning him king of prom, Christmas ball, and homecoming. Matt always wanted to look good and enjoyed fashion. Armani Exchange and INC were his favorites, but his smile and charisma overshadowed his clothes. “

Matt DiIorio, a lifelong resident of Rhode Island, graduated from Johnston High and Bryant University.

“Some of his proudest moments came while he was running the men’s basketball team at both schools,” the obituary read. “In college, he was a member of the Delta Chi Brotherhood while doing a bachelor’s degree in communications.”

Despite the FA’s challenges, Matt DiIorio refused to surrender.

“Matt died at the age of 40 on July 4, 2021 due to complications from FA,” the obituary read. “It is true that he died while he was alive and spending time with his family on vacation in Sun Valley, Idaho.”

His family thanked those who helped make life a little easier.

“The DiIorio family values ​​the people who have supported Matt with countless kind and loving deeds throughout his life,” says his obituary. “The family also thanks the doctors who treated and cared for him from the bottom of their hearts.”

On Monday, July 12th, at 11 a.m., a Christian funeral mass was held in the Catholic Church of Our Lady of Grace.

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

Instead of flowers, the family is asking for donations in memory of Matt to FARA in support of the Race for Matt and Grace.

For more information, visit www.curefa.org/rfmg (Checks to FARA can be mailed to 533 W. Uwchlan Ave., Downingtown, PA 19335; reference RFMG).

Cranston’s Woodlawn-Gattone-Remington Funeral Home took care of the arrangements.

Reminders and condolences can be shared on WoodlawnGattone.com, and details of tree plantings in memory of Matt DiIorio can also be found online.

At the beginning of Matt DiIorio’s obituary, his family asked two questions. For most of us, the answers shed a shining light on the legacy that DiIorio will undoubtedly leave behind.

“How many of your friends would carry you up a flight of stairs or on a plane?” “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 memory of Matt DiIorio.


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