News
Survival Victory Leads to $100,000
By: Lona O'Connor
Palm Beach Post
May 9, 2004
Sunday BOCA RATON -- By anybody's calculation, the odds that Jay Feinberg would be the first winner of the $100,000 Charles Bronfman Prize were pretty darn good. After all, he was one of only 80 people nominated for the newly created prize for humanitarian work.
For Feinberg, a 1-in-80 chance is a walk in the park. He is all about long shots. In 1991, at the age of 22, he was diagnosed with chronic myelogenous leukemia, a fatal disease rarely found in people his age. His only shot at survival was a bone marrow tissue graft, and he had to find a donor of the same ethnic background, which happens to be Ashkenazi, or Eastern-European Jewish descent.
At the time Feinberg was diagnosed, fewer than 1 million people were registered on marrow donor databases around the world. Of those, only about 5 percent were Ashkenazi. "I was told I would never find a donor, my tissue type was so unusual," he said. For nearly four years, Feinberg and his family combed donor registries and had donor drives to find possible new donors who might match him. They registered 60,000 potential donors, including his extended family, but not one matched Feinberg's tissue type. By 1995, Feinberg's condition was grave. He had reached the 3 1/2 years of life expectancy the doctors had given him, and the leukemia was overwhelming him. He and his family decided to arrange a transplant from a mismatched donor, a very risky proposition, but at that point his only chance. Tissue rejection and death were likely.
A friend in Milwaukee had one last donor drive, though Feinberg told him it was too late. Inexplicably, a 16-year-old volunteer worker at the drive, squeamish about needles, decided at the end of the drive to be tested as a donor.
That volunteer, Becky Faibisoff, the last person tested, was Feinberg's miracle match. She donated bone marrow in July 1995 and Feinberg has been free of leukemia since then. "Whenever I tell that story, people say it can't possibly be true," Feinberg said. "Even people in the bone marrow world say that no patient ever finds their own match. But I say, nothing is impossible. It happened for me."
Feinberg won the Bronfman prize for the organization he founded, Gift of Life, which locates and registers bone marrow tissue donors around the world. Gift of Life is based in Boca Raton. The prize recognizes people under the age of 50 for extraordinary public service. "Jay is a hero," said Stephen Bronfman, Charles Bronfman's son and co-chairman of the foundation. Gift of Life grew out of his personal search for a genetically matched marrow donor.
He realized that he had tapped into a substantial network of potential donors. Some of them became the donor base of Gift of Life, which has also increased the number of Ashkenazi descendants in the worldwide registry, even though their numbers were decimated by the Nazi Holocaust.
Started by Feinberg and his family, Gift of Life has registered 75,000 people worldwide and matched about 1,000 donors with recipients who have leukemia, lymphoma, anemia and related diseases. It is considered one of the most successful of the 53 tissue donor registries around the world.
On May 20, Gift of Life will host its annual fund-raising gala in New York City. There, three marrow donors will meet the people whose lives they saved. It should come as no surprise that Feinberg is rolling his $100,000 prize right back into charitable work. One portion will go to the Fred Hutchinson Cancer Research Center in Seattle, Wash., where he received his bone marrow transplant.
The prize also will help pay for a new type of tissue drive at Gift of Life: forming a registry of umbilical stem cell donors. The traditional methods of tissue donation are extractions from the pelvic area and blood transfusions after a special treatment that temporarily increases the number of blood-forming stem cells. Umbilical stem cell donors donate a small amount of blood from newborn babies' umbilical cords, a rich source of the stem cells that form healthy blood.
Feinberg's next big push will be a campaign to inform obstetricians to help find potential donors among their patients. All three methods of tissue donation are relatively harmless to the donor. Faibisoff, for example, went to a party the day after she donated tissue to Feinberg. Potential donors can be tissue-typed with a mouth swab.
Feinberg was headed to law school when his leukemia was diagnosed. Now, instead of poring through law books, he studies medical journals with names such as Bone Marrow Transplantation and Blood. His work is his passion, his baby, he said. But he is planning on taking a break to travel to Australia, with his parents, Jack and Arlene, of Boynton Beach. Even this vacation illustrates Feinberg's unique relationship with the odds:
The long and frustrating search through his extended family and 60,000 strangers did not yield a single tissue match, but it did turn up long-lost cousins of his father, thought to have been killed during the Holocaust. Unbeknownst to Jack Feinberg, his cousins fled Poland and were accepted in Australia, where they have been living ever since. Information is available at www.giftoflife.org.
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