Joe Martucci gets emotional when talking about the help he got from the community.
"I'm a parent, to see the support of friends and family," he said. "To me, it was very personal. People that often couldn't afford were giving."
He was helping to organize an annual gala event for Fibrodysplasia Ossificans Progressiva, or FOP, an uncommon condition that causes bone to form in muscles and ligaments.
Frequently misdiagnosed as tumors, FOP eventually imprisons the body in what's described as a second skeleton.
"It's a race to find a cure, because overnight, a person's life can change forever," Martucci said.
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His daughter Ashely was diagnosed at age 11, and Joe eventually became a board member for the IFOPA, which funds awareness and research to find a cure.
For the last four years, they've held their fundraiser at a downtown hotel, raising more than $1 million. At the beginning of the year, Martucci paid the down payment to reserve the venue overlooking the Statue of Liberty.
"It was $34,000," he said.
But COVID canceled their June event, and since the hotel was closed, rescheduling wasn't possible. Luckily, the contract contained a "force majeure" clause, allowing it to terminate if unforeseeable circumstances prevented the fulfillment of the contract.
"Around July, we contacted the hotel and asked them for a refund," Marticcui said.
The hotel promised to "expedite" a full refund in "60 days," but instead, Martucci says they went radio silent.
"It was emails, phone calls, demand letters," he said. "They just weren't responsive."
So we tracked down and appealed to the hotel's parent company.
"Literally the next day, we got a phone call," Martucci said. "And the day after that, we had a check in hand."
The check was for $34,000, every penny of donations Martucci had raised.
"7 On Your Side shook the tree, and it was amazing," he said. "And I thank you for that."
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It's important to note that the hotel, like many venues, is hurting too. A representative said it is doing everything it can to pay outstanding debts in a timely manner and asked for patience during these unprecedented times until they can reopen.
As for the refund, 100% of the money will go toward research and hopefully a cure for FOP.
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