Jay Feinberg, founder of the Gift of Life bone marrow registry, is a leukemia survivor who founded the registry after he received a successful bone marrow transplant in 1995. Feinberg, 45, of Boca Raton, Fla., was the inaugural recipient of the Charles Bronfman Prize in 2004.
Feinberg’s mother, Arlene, who died in January at the age of 81, had organized 250 bone marrow match drives that tested 60,000 potential donors before a match was found for her son. In her memory, the Gift of Life Bone Marrow Foundation (giftoflife.org) will kick off a $4 million fundraising campaign with an online “virtual gala” June 22 at 7 p.m.
Q: When your mother started the bone marrow match drives, how many potential donors were in the registry?
A: I believe there were 300,000 donors worldwide. Today there are about 25 million. Those drives started in my parents’ dining room table in New Jersey after the doctors said there was nothing more they could do for me.
How long did it take before a match was found for you?
About four years. At the time I was diagnosed, we were told there was less than a 5 percent chance of finding a match because I am Jewish and there were not that many Jews on the donor list. Today the odds are about 75 percent and that is probably because of the publicity we were able to achieve for the donor match drives. But Sephardi Jews are woefully under represented — I would estimate in the order of 40 percent.
What does being Jewish have to do with it?
It is not your religion; it is your ethnic background. Tissue type is inherited, just like the color of your eyes and hair. So your best chance of finding your genetic match is to find someone with your ethnic background. For me, that was Ashkenazi Jewish. The more closely knit the community you come from, the more likely it is that a match will come from that background. And for the Jewish community, when you go back generations in Eastern Europe where people would marry within the shtetl, tissue types were very similar — and it is often seen only within those communities or ethnic groups.
How long does it take to check for a match on the bone marrow donor registry?
Seconds. At the time I was diagnosed, the search was a manual process and my search coordinator had to send a fax to each country that had a registry. Today, it is all online and automatic.
With a registry of 25 million, what are the chances for a match today?
It depends upon your background. For those whose ethnic background is not well represented in the registry, it is like looking for a needle in a haystack. That is why the registry has to be diverse.
How many drives do you do in a year?
One thousand. On college campuses they are run with Hillel and Jewish fraternities, and we recruit donors when they go on Birthright trips to Israel. It has become part of the program. A large number
How many matches have you helped arrange?
We have facilitated over 2,700.
Does it always work?
It has been about 65 to 70 percent successful. We transplant patients with about 100 different diagnoses, so it depends on what they are diagnosed with, the stage and their age — many different factors.
You have announced that the event June 22 is to honor your mother’s legacy.
My mother believed that no mother should be told her child will die because they can’t find a match. In the Gift of Life, we have 235,000 Jews registered. We focus on recruiting in Jewish communities all over the world.
DI understand this year’s annual event will be a virtual gala that will be streamed online.
Yes, because it is so soon after my mother’s death. The goal is to increase the likelihood of a match for Ashkenazi Jews from 75 percent to 100 percent. So we have started a campaign to recruit another 70,000 donors to bring our registry to 300,000. I will be reaching out to philanthropists and foundations to get them to help sponsor all of those tests, each of which costs $60. The founder of Bed Bath & Beyond, Warren Eisenberg, and his wife, Mitzi, will chair the campaign.