Cancer battle spurs entrepreneur to start donor registry

Jay Feinberg, founder of Boca Raton, Florida-based Gift of Life Bone Marrow Foundation, poses near a cryo-preservation tank at the University of Massachusetts in Boston in this undated handout photo. The tank is used to store cord blood units.

CHICAGO (Reuters) - These days most college graduates worry about finding a job, 20 years ago Jay Feinberg worried about finding a donor. It was 1991, and Feinberg was told he had leukemia, the cancer that attacks blood cells.

He spent the next four years, in waning health, searching for a bone marrow donor. Being Jewish, his potential match was made even scarcer. As he prepared to get a transplant from a mismatched donor, a 16-year-old girl from Illinois, the last of about 130 people tested one day in mid-1995, stepped forward.

"She saved my life," said Feinberg, now 42, who was emboldened to stick with the donor registry he created shortly after he learned of his illness. "I felt how could I not continue to do this?"

Feinberg abandoned plans to become a lawyer and devoted himself fulltime to running Gift of Life Bone Marrow Foundation, his nonprofit venture now based in Boca Raton, Florida. It has nearly 188,000 donors and has helped more than 2,300 patients receive bone marrow and stem cell transplants.

"We had built such a tremendous force here with thousands and thousands of volunteers and subject-matter expertise," said Feinberg, whose mission began after his doctor told him that his chances for a donor match were slim and he should start compiling a bucket list. "We really put a lot of time into figuring out how to run these (donor) drives strategically. It wasn't a simple prospect."

Gift of Life retains a staff of 40 - double from five years ago - and besides a fundraising setback during the downturn in 2008, its budget has steadily grown, reaching $6 million annually. The group also operates a program to collect stem cell rich cord blood after women give birth.

TECHNOLOGY OF TESTING

Back when he started, Feinberg said the awareness of bone marrow transplants was "pretty minimal," adding correspondence was mostly done by fax machine. Then, becoming a donor registrant required blood samples; today, only a cheek swab is necessary.

The shortage of Jewish donors sent his family into overdrive. They launched a grassroots campaign that began in their New Jersey community and ultimately raised millions, tested 60,000 people and found matches for hundreds of other patients along the way.

"We went home, started brainstorming around the dining-room table, and before long we were running drives," said Feinberg, whose mother, a retail entrepreneur, led the charge. Their success culminated with appearances on national television shows such as Sally Jessy Raphael. "It was truly unbelievable."

Feinberg's 11th-hour reprieve likely explains his tireless approach. Evie Goldfine, a retired telecoms executive and transplant recipient who serves as a volunteer advisor to Gift of Life, concurred.

"He will do whatever he needs to do to save a life," Goldfine said, noting the group has dramatically raised the odds of matches among underrepresented populations. "He'll talk to the patient, spend hours on the phone."

DONATION DOWNTURN

Such determination is essential at a time when charities are recovering from the recession, having experienced combined giving declines of more than 13 percent in 2008 and 2009, according to the Giving USA Foundation. Last year saw a modest uptick of 2.1 percent.

Jeffrey Bryne, a Kansas City-based fundraising consultant whose clients include healthcare organizations, said Gift of Life has a built-in advantage.

"Certainly when you're talking about a healthcare registry and patients whose lives are contingent on donor transplants, those are particularly grateful (patients) and families," he said.

It also helps that Feinberg has surrounded himself with an influential board of fundraisers that include physicians, attorneys and businessmen, including Warren Eisenberg, co-founder of retail giant Bed Bath & Beyond.

"Jay is always willing to try new things," said Eisenberg, pointing to marketing methods ranging from social networking to walk-a-thons. "As we match more and more people and save more lives, it's like a ripple effect. I think it will continue to grow."

Feinberg places a premium on customer service, making the education and comfort of donors his priorities.

"I've done it twice and I would do it again," said Ben Nagin, 39, a Manhattan attorney who donated stem cells to a young girl, a process that required half a day hooked up to a machine with needles in his arm. "They don't just say there's a match, good luck. They walk you through the process, they call you, email you. They'll send a car for you."

For his part, Feinberg continues to get the word out, spending much of his time on the road fundraising, with plans to reach 20,000 registrants by year-end. He's set on bucking trends that according to Bryne may not show a return to pre-recessionary charitable giving for five to six years.

"Life throws some curves," Feinberg said, adding: "That's the reason I go to work every day."