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Hundreds sign up to fund transplants
POLAND
Hundreds of community members signed up to fund life-saving transplants.
About 270 people pre-registered for an inaugural fundraising gala for bone marrow donor registry Be The Match on Thursday evening at The Lake Club, coordinated by Mahoning County Engineer Pat Ginnetti.
“The two most scary words you’re going to hear are ‘cancer’ and ‘chemo,’” said Ginnetti of his late wife, Missy, who was diagnosed in 2010 with stage-three Hodgkin’s lymphoma. “My wife – she took it in stride. She cried, I’d say, 30 seconds and said, ‘All right. We gotta beat this.’”
That blood cancer is one of 70 types – including sickle cell anemia and several types of leukemia – that can be cured through bone marrow or stem-cell transplants. Be The Match maintains the “largest and most diverse” bone marrow donor registry in the world with more than 8.5 million registered donors, said spokeswoman Kristin Scott.
Of the more than 16,000 people who sought a tissue match last year, the nonprofit facilitated more than 6,000, she said. The organization, which formed in 1987, is quickly approaching its 100,000th bone marrow transfer, she said. But they still must turn away about 24 people a day for lack of a match.
Though Caucasian recipients have a 70 to 80 percent chance of finding a matching donor, the ratios drop sharply for Hispanics, Latinos and Asians, down to just 23 percent for blacks, Scott said.
“There’s a vast disparity there. A big reason for that is we just need more people on the registry, ideally between the ages of 18 and 35,” when donors’ tissue is the most viable, she said. “We’re working really hard to get more deeply connected in these communities, to educate them, to have advocates work with them.”
Ginnetti said his wife clung to that hope for a cure after they learned Jan. 18, 2013 – the day after her birthday – the cancer they thought was beat by two years of chemotherapy had returned.
Missy Ginnetti flung herself into volunteerism with Be The Match, running donor drives and ringing phones for donations and, at the same time, undergoing bone marrow taps to determine her suitability in the registry – one of the “most painful tests,” Pat Ginnetti said.
But for Missy, they weren’t “so bad,” he said.
“She always had a good attitude. She never wanted people to see her as a sick person,” Ginnetti said. “She always had a smile on her face.”
Though Missy Ginnetti died in 2016 after an unrelated blood clot traveled from her leg to her heart, her transplant put her cancer in remission and gave her another two years of life, Pat Ginnetti said.
“‘You not only saved my life but the life of my husband’s wife and my kids’ mother,’” Missy Ginnetti wrote in a letter to her donor, Daniel Cox, a then-21-year-old college student from southern Indiana.
“That put things in perspective for me,” Cox said. “I was elated. I can’t really describe that feeling.”
Cox said he registered to donate through Be The Match as part of a class assignment when he was a 19-year-old undergrad at Indiana University. He matched with Missy Ginnetti two months later.
They met in 2015, and a few months later, the Ginnettis were waiting for him at the finish line of a triathlon Cox ran in her honor. It’s one of his most cherished memories, he said.
Cox is now a 24-year-old medical school student who regularly volunteers with Be The Match.
For Ginnetti, that volunteer work is part of the grieving process.
“It just became a passion of mine that I need to do. It’s helping me heal. It’s helping me grow,” he said. “This is a way to help me move on.”
Ginnetti said he hopes to make Thursday’s Missy Ginnetti Hope Gala an annual event to raise money for other patients seeking bone marrow transplants.
“We want to help other families that went through the same thing we went through,” he said.
The goal of Thursday’s fundraiser was $110,000, which Scott said at the night’s outset seemed very possible.
“For a first-time event, to be able to raise that much money is incredible,” she said. “It’s clear this community is so deeply connected, and they very much care for one another. That truly shows in the way they’ve shown up en masse tonight.”
At times losing composure during his pre-dinner remarks, Ginnetti said the Thursday gala was exactly the type of event his wife would enjoy.
“She loved being around friends. She loved having a good time. But she also had a purpose,” he said. “Looking at all the people here and all the support we’ve gotten really shows you what’s important. Every one of us here tonight are helping someone.
“[Cox] gave Missy two more years that she probably wouldn’t have had. … He gave her hope for a cure. Hope for tomorrow.”