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Tuesday, Sep 23, 2014

Scullin: Pinellas couple push to find minority marrow donors

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Their journey began in 2007, the year after their 10-year-old grandson, Pat Pedraja, was diagnosed with acute lymphoblastic leukemia. After learning how few minorities were represented in the National Marrow Donor Program Registry, Pat, who is of Cuban descent, hit the road in a rented RV to recruit more minority donors. His story drew national attention, as people were moved by his personal story and his dedication to signing up donors.

His grandparents, Gordon and Sharon Small, of Palm Harbor, did more than go along for the ride. They knew very little about the importance of bone marrow donors when their trek up the east coast began but became powerful advocates for the cause along the way.

“We learned that we could speak very effectively to people because we had this personal connection with Pat,” Gordon said.

“When I believe in something as important as this, it’s very easy to communicate.”

Now 18, Pat’s cancer has been in remission for 4½ years. He enrolled at UCLA in the fall and plays on the hockey team.

His grandparents, meanwhile, still are recruiting donors — always with an eye toward adding more minorities to the registry. Last month, the Be the Match Registry honored Gordon and Sharon with its Volunteerism Award for their continuing efforts.

Under the banner of Marrow Nation, the nonprofit organization they started in 2009, Gordon and Sharon have recruited more than 12,000 bone marrow and stem cell donors. More than 50 percent of the people they’ve signed up are minorities. I wondered why that was such a focal point, but it makes sense when Gordon explains it to you. Tissue matches between donors and transplant recipients are more often successful between people of the same racial or ethnic backgrounds. So having more minority donors in the registry improves the chances for minorities needing transplants.

A lot of hard work goes into the success Gordon and Sharon have had. They each spend about 40 hours a week putting together and staffing their donor-recruitment drives and filling out paperwork. Gordon already was retired when they started, and Sharon left her job to devote herself full-time to their efforts. They make a good team: Gordon enjoys the pitch, convincing people of the importance of becoming a donor. Sharon is good with the paperwork and guiding people from that initial commitment and getting them into the registry.

So far this year, they’ve done more than 60 donor drives. Most are in Hillsborough and Pinellas counties — usually on college campuses or other places where young people congregate. Last week, they did two in Palm Harbor, and they’ll be at Florida State University for the next two weeks, setting up shop at homecoming, a powwow and other events.

The best donors are in their mid- to late 20s, Gordon said. Because people’s immune systems decline over time, they only can stay in the registry until they’re 61. So signing up people while they’re young allows more time to match their samples with people needing transplants. People often don’t commit the first time they see Gordon, either. So being around, as he and Sharon are in Tallahassee this month, helps people get comfortable with the idea. About 25 percent of those who sign have up have seen him before, Gordon said.

The sales pitch isn’t as tough as you might think. Most of the questions are about how painful the procedure is — there’s soreness by the time the anesthesia wears off but not a lot of pain, Gordon says — and privacy concerns about giving the registry a DNA sample. That doesn’t happen, Gordon said. Donors provide a sample through a cheek swab and only donate if they match a transplant candidate. Only about one in 100 do, he said.

Despite Gordon and Sharon’s success signing up donors, the need continues to be great. Last year about 6,200 people received transplants, but more than 5,000 people did not find matches.

“It’s a simple problem to fix,” Gordon said. “It’s a numbers game.”

To learn more about becoming a donor, go to www.bethematch.org.

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