The Friedreich’s Ataxia Research Alliance, or FARA, held its 10th annual Race for Matt and Grace event on Saturday, Sept. 21, at Rhode Island College to celebrate a decade of research and treatment.
Matt DiIorio – one of the namesakes of the Race for Matt and Grace – suffers from Friedrich’s Ataxia, a degenerative neuromuscular disorder. He and his parents, Jack and Sallyann, have been instrumental in helping out with the race and its other fundraising events for years.
WPRI chief meteorologist Tony Petrarca gave a short speech welcoming everyone to the event at around 9 a.m. Shortly after, Mike Crawley, co-chairman of the Race for Matt and Grace, gave some insight into FARA’s mission.
“FARA was formed in 1998 and they’re strictly a research organization,” Crawley said. “They link up with the pharmaceutical companies and doctors and scientists and fund grant programs to move research along to connect the medical community with the patient communities.”
FA patients Nicholas Carbone, Alex Fielding, Matt DiIorio and Jean Walsh gave added insight to what living with the disease is like.
“Every day is a struggle” Fielding began, “Every day is a battle, it’s not easy, some days you don’t even want to get out of bed. But when we see all of you here today, that is our motivation. Your support and your energy, gives us the fuel to keep going.” DiIorio added, “Thank you for supporting FARA and people like me. You all know how special you are.”
Carbone stated that, “Being diagnosed with FA is a scary thing.” Walsh offered some comic relief by saying, “I was diagnosed 37 years ago, and back then there was no FARA. At that time the doctors told me to take some Vitamin E, and as you can see that didn’t stop anything.”
Wrapping up the speeches, president and co-founder of FARA Ron Bartek gave some hopeful thoughts about the future of FARA and how far they have come.
“Ten years ago we had an International Scientific Conference of FA that had only 150 scientists from around the world,” Bartek said. “This November we will hold the seventh conference and it will have 450 scientists.”
He added, “The first conference only had six drug companies. This one will have over three dozen.”
With the blow of an airhorn, Rhode Island College President Dr. Frank Sanchez started the race. Attendees ran the 5K or 1.5 miles by starting at College Road, and went past buildings like Whipple Hall, Adam’s Library and Gaige Hall. Soon they made their way up to Fruithill Avenue, and afterwards they ran through Olney Avenue through Mt. Pleasant Avenue and back up to College Road.
Following the race, an after-party was held at RIC in order to raise awareness and funds for those suffering with Friedrich’s Ataxia. To donate or for more information, please visit curefa.org.