Founder of Marrow Registry to Use Prize Money to Give Life

Jay Feinberg doesn’t like being called a hero. Founder of the Gift of Life bone-marrow registry, Feinberg reserves that term for organ donors.Most people would disagree with him.

Last week, Feinberg, 35, received the inaugural Charles Bronfman Prize, a new award for humanitarian efforts in the Jewish world. “Different people do wonderful things in the Jewish world and beyond,” Stephen Bronfman said. Feinberg’s story “really hit a note in all of us,” he said. “How could it not? He’s a real lifesaver.”

Stephen Bronfman, along with Ellen Bronfman Hauptman and Andrew Hauptman, chose Feinberg for the prize, which was created in honor of their father’s 70th birthday. The prize will be given annually.

“We wanted to do something that would respect what he has done through his life,” Stephen Bronfman said. “To perpetuate Dad and his attention to humanitarian issues, to the Jewish world and to youth.”

As part of the award, Feinberg will receive $100,000, most of which he plans to donate to Gift of Life, which is funded by private donations and grants, mostly from Jewish organizations.

Gift of Life is a bone-marrow registry geared specifically for Jews. The genetic make-up of all body tissue — including bone marrow — is an inherited characteristic, and Gift of Life offers Jews from similar ethnic backgrounds better odds of finding a viable donor.

Like other small ethnic groups, Jews are under-represented in the nearly 50 worldwide bone marrow registries. They face an added challenge because so many Jewish bloodlines were severed in the Holocaust.

Gift of Life grew out of Feinberg’s own search to find a donor after he was diagnosed with leukemia in 1991. During the four years until he found a donor, nearly 60,000 people were tested — and some matched with other needy patients — thanks to an organization of family, friends and volunteers then known as Friends of Jay Feinberg.

Following his recovery, Feinberg created Gift of Life to expand the registry as a “way of giving back,” he said.

“A hero saved my life,” Feinberg said. “I can think of no greater thing to do with mine.”

During the past decade, the organization has registered another 75,000 people as potential donors. Nearly 1,000 donations of bone marrow and peripheral blood cells already have taken place.

Feinberg said he hoped to announce a new cord-blood registry — blood from the umbilical cord, rich with immature stem cells, also is effective in bone marrow transplants. Cord blood often is a more viable donation than bone marrow or blood stem cells, but it can cost around $1,000 for the first year and $100 each year after that to store.

Feinberg’s organization is expected to partner with Hillel this fall to mobilize college students for the cause.

To determine if two people match, doctors look at the proteins on the surface of each person’s white blood cells. A “perfect match” occurs when 10 human antigens match up. The closer the match, the less chance there is of graft-versus-host disease, an ailment similar to organ rejection following an organ donation.

Feinberg’s match was Becky Faibisoff of Milwaukee.

In order to accept Faibisoff’s bone marrow, Feinberg’s immune system was completely destroyed through total body irradiation and chemotherapy.

Then, over two hours, the new marrow was infused, followed by a grueling recovery that lasted nearly two years.

Since the 1995 procedure, science has progressed, as have Feinberg’s efforts to keep his registry up to date.

Today, he said, doctors choose whether they want their patients to receive blood stem cells or marrow. Cord blood increasingly is harvested and stored for future transplants.

Already, Feinberg has attracted the attention of families whose relatives he has helped.

“There are nearly a thousand people alive and well today because of his efforts,” Warren Spector wrote in a letter endorsing Feinberg’s nomination for the Bronfman Prize. “By his existence as a transplant survivor, Jay is a comforting presence. His own survival offers patients hope in their darkest hours.”