Set for 7th year, Race for Matt & Grace continues to grow

By Daniel Kittredge
Posted 9/7/16

Several years ago, Katie Hopkins set out on an journey – or, as she describes it, “went on a prayer” – with an ambitious goal.

In the fall of 2008, her cousin Grace Hopkins – a …

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Set for 7th year, Race for Matt & Grace continues to grow

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Several years ago, Katie Hopkins set out on an journey – or, as she describes it, “went on a prayer” – with an ambitious goal.

In the fall of 2008, her cousin Grace Hopkins – a Connecticut resident who was about to celebrate her 13th birthday – had been diagnosed with Friedreich’s ataxia (FA), a degenerative neurological disease that affects roughly 5,000 Americans and currently has no cure.

At the time, Katie, a resident of Massachusetts with family in Rhode Island, had been actively participating in 5K road races. She decided to begin one of her own, the Race for Grace, to support the efforts of the Fiedreich’s Ataxia Research Alliance, or FARA.

“I told some people. They thought I was crazy,” she recalled with a smile.

Getting the race started was an intensive task that Katie said required a “team effort.” Family members helped to obtain sponsors and raffle prizes, and a group of her college friends ran the registration table – a role they have continued to play in the years since.

The event’s first two installments were held at Colt State Park in Bristol, and word quickly began to spread. One of those who connected with Katie was Jack DiIorio, father of Matt DiIorio, a Johnston resident who was diagnosed with FA more than two decades ago.

Jack had heard about the Race for Grace during a blood drive, and reached out to Katie by email to share Matt’s story and seek to get involved. Soon, the DiIorios and their wide support network became a part of the event, and its success continued to grow.

In 2012, the event was renamed the Race for Matt & Grace, and the next year it moved to a larger venue at Bryant University in Smithfield.

On Sept. 24, the race will mark its seventh year. It will be the first held at the event’s new home, the Rhode Island College campus in Providence.

The race is expected to draw upwards of 400 people, including runners, vendors, volunteers, and others who participate. The sixth installment in 2015 raised roughly $63,000 for FARA, and last year’s total fundraising totaled approximately $90,000. The cumulative total raised during the first six years topped $250,000, and the hope is to raise another $100,000 this year.

“We’re very lucky,” said Mike Crawley, a longtime friend of the DiIorios and co-chair of the Race for Matt & Grace along with Katie. “We have a strong, committed base of people.”

Registration runs from 8:30 a.m. to 9:15 a.m. on race day, with a speaking program beginning at 9:30 a.m. The 5K begins at 10 a.m., and participants may run, walk, or roll the course. The race will be timed digitally. Mike Motecalvo and Kelly Sullivan of WPRI will serve as the hosts and emcees of the event.

The post-race party will again be held at the Portuguese American Social & Athletic Club at 32 Fernwood Ave. in Smithfield, running from noon to 4 p.m. It will include food, drinks, raffles, and music from Erik Narwhal & the Manatees.

More information can be found on the race’s website, curefa.org/RFMG.

The organizers of the event have also dramatically increased their fundraising efforts outside the annual race. A growing volunteer committee holds regular meetings, and continues to generate new ideas to support FARA.

“We look for ways to keep it different, keep it fresh,” Crawley said.

For example, a comedy fundraiser held with Funny 4 Funds earlier this year in celebration of Matt’s birthday raised more than $18,000. Numerous restaurants and other establishments have hosted special nights for the cause, donating a portion of sales to the group.

Anne Senerchia, a member of the volunteer committee, said the group is working with a program offered through Savers that provides 20 cents for every pound of donated clothing, and 5 cents for every pound of other goods.

“It’s easy,” she said. “It’s no cost to us, and it’s a great way to raise money.”

The Trans-Siberian Orchestra will donate a portion of ticket sales from its Nov. 20 performance at the Dunkin’ Donuts Center to FARA. The band has traditionally supported a non-profit entity in this way.

Crawley said the group plans to partner with Halo Text, an organization started by former Olympian Sara DeCosta-Hayes and her husband Mark Hayes Jr., which uses text-message marketing to offer consumers discounts to preferred companies while supporting non-profit and charitable causes. The initiative is set to begin in October.

FARA is also now on the list of eligible beneficiaries for the Rhode Island State Employees Charitable Appeal, which allows state employees to provide support for various causes. Crawley said the Halo Text partnership and the state employees program will help provide a continuous “revenue stream” to “keep FARA’s mission moving forward.”

The Race for Matt & Grace often refer to the FA community as “FAmily,” providing a means through which those fighting the disease can share resources and provide others with support.

For the local group, it has recently taken on a deeper meeting. Crawley met his fiancée, vocalist Marissa Beatini, during a FARA benefit event.

“It’s nice to see the generosity of people,” Beatini said of her involvement with the group.

The connections the volunteer group has built with those working to cure the disease have also paid dividends and opened doors.

Members of the local FARA fundraising group saw the “The Ataxian” – a 2015 documentary that follows Kyle Bryant, who has been diagnosed with FA, and a team of his friends as they attempt The Race Across America bicycle race – during a recent screening in Cambridge, Mass.

Crawley called the film “compelling, well done, and moving,” and said there is hope a local screening can be arranged. He said the Cambridge event provided a chance to interact with researchers, and those conversations – coupled with a close ongoing relationship with FARA – reinforced the belief that there is a “legitimate shot” to cure FA.

“They’re in a race to get there first,” he said of the researchers. He also repeated what has become a frequent saying in praise of FARA: “They’re in business to go out of business.”

Grace turns 21 in October, while Matt turned 35 this year. Crawley said both continue to be an “inspiration” to friends, family members, and countless others whose lives they have touched.

Their continued perseverance and optimism in the face of such adversity has defined the spirit of the volunteer group over the years.

“The theme with this group is no matter what happens, they always get the job done,” volunteer committee member Dan Forlasto said.

“It’s amazing,” said Sallyann DiIorio, Matt’s mother. “They never stop trying to do new things.”

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