Friedreich’s ataxia (FA) is a neuro-muscular, genetic disorder that affects one in roughly 50,000 people in the United States. It is debilitating, progressive and currently has no cure.
Johnston native Matt DiIorio was diagnosed with the illness in 1994. For some time, he and his family were unsure where to turn for information and support.
Now in his early 30s, Matt went on to attend Bryant University, graduating in 2004 with a degree in business communications. He maintained a positive outlook and stayed active, managing the basketball team, joining the Delta Chi fraternity and working for several years as a DJ after finishing school.
Matt had taken part in an FA clinical trial at the National Institutes of Health more than a decade ago, and at that time was introduced to Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Association (FARA).
In the years before and after that, however, Matt and his family faced FA largely alone.
That changed in 2010, when Matt met Erin O’Neil at a Massachusetts blood draw event for FARA. She became his oldest FA friend, and introduced him to other members of the community.
One of those introductions proved particularly special. 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. Her cousin, Katie, has family in Rhode Island, and began the annual 5K – previously held at Colt State Park, with a post-event party at Gillary’s in Bristol – to raise awareness and funds for FARA as it works to develop treatments and find a cure.
Matt and his family became involved in the race. Then, Katie announced the name of the 5K had been changed. It would now be called the Race for Matt and Grace.
“I was humbled,” Matt said.
For Matt, connecting with the FA community has been life changing. He provides guidance and support to others dealing with the condition – particularly younger children – and attends a wide range of events, including fundraisers and FARA symposiums.
Matt’s family and friends have been alongside him throughout the journey, and they have also seen a major shift in their lives since he met Erin.
“The unknown … hopeless kind of feeling – now we don’t have that,” said Michael Crawley, a longtime friend of the DiIorios and the co-chairman of the Race for Matt and Grace along with Katie. “We’re not alone anymore.”
“They’re so accessible … It means the world for the family,” Matt’s mother, Sally Ann DiIorio, said of FARA.
“We’re fortunate to have a large network of friends in the area,” Matt’s father, Jack, said.
This year’s Race for Matt and Grace, the fifth annual event, will be held Sept. 20 at Bryant University. Registration is from 8 to 9 a.m., with the 5K starting at 10. Participants may race, walk or roll the trail and walking course. WPRI 12’s Mike Montecalvo will serve as the day’s host.
The after-party will be held at The Last Resort on Farnum Pike in Smithfield, running from noon to 6 p.m. There will be food, drinks and a raffle, as well as swimming, volleyball and live musical entertainment from Erik Narwhal and the Manatees.
More than 300 people took part in last year’s event, and about 12 people sit on the planning committee. Many others – including members of Matt’s fraternity, Delta Chi, and the rest of the Bryant community – will also lend a hand to make the gathering a success.
“People are so helpful,” Sally Ann said.
“We’ve been lucky and blessed with a lot of support,” Michael said. “There’s no reason to think this won’t be the best event yet.”
Michael also pointed to the importance of grassroots fundraising in supporting FARA.
From a June gathering at the Flatbread Company pizza restaurant in Providence that raised roughly $2,700 to individuals selling “Race for Matt and Grace” bracelets, small events and individual donations make up a large share of FARA’s resources.
The event has also seen significant corporate support. CVS is aboard as a major donor, and a litany of other companies and organizations have lent their support as well.
“[FARA needs] all the things that can add up,” Michael said.
The organization, which is dedicated to research, has shown its gratitude and been a consistent presence at the local race. Jennifer Farmer, FARA’s executive director, is among those who have attended the 5K and festivities.
Michael referred the inclusive nature of the FA community – one in which researchers, advocates, families and those diagnosed with the disease regularly connect with and support one another – as “FAmily.”
In terms of raising awareness and funding, Michael said the rare nature of FA poses some challenges. There are many such conditions, and countless stories of those affected.
What makes FA different, he said, is that a breakthrough is in sight – and those working against the disease are committed to seeing their efforts bear fruit.
He recalled a conversation with one researcher, during which he asked what made FA stand out from other rare conditions.
“We think we can get this one,” the researcher replied.
“They’re in business to go out of business,” Michael said. “They are just so genuinely vested.”
“These people aren’t going to stop,” Sally Ann added, “until they beat it.”
The Race for Matt and Grace has raised more than $90,000 to support FARA.
For more information or to register, visit www.curefa.org.