“Gift of Life” Brings Jewish Community Together
by Yaffi Spodek
Less than two years ago, Leya Parker was told she had just 10 days left to live. The mother of four from Atlantic Beach, Florida, was battling leukemia and desperately needed a stem cell transplant. She got a second chance at life, thanks to Boca Raton native Jonathan Struhl, a complete stranger who anonymously donated his stem cells through Gift of Life, a national bone marrow and stem cell foundation headquartered in Boca.
The foundation’s objective is to continue adding donors – like Struhl – to its bone marrow and stem cell registry, a particularly important resource for Jewish patients, who are genetically underrepresented in the pool of donors. The odds of a Jewish patient finding a match are certainly improving, but more help is needed from within the community. An Ashkenazi Jew used to have only a five percent chance of finding a match in the worldwide registry and now that number is up to about 75 percent, compared to 40 percent for Sephardic Jews and 90 percent for most Caucasian groups that are well represented.
A simple cheek swab that Struhl had given several years prior – during a bone marrow drive at a charity event he organized – identified him as a perfect genetic match for Parker. But not everyone is as lucky as Parker, and the statistics are daunting: every four minutes, someone is diagnosed with blood cancer, and the only cure is a bone marrow or stem cell transplant. However, every 10 minutes, someone dies because they are unable to find a donor match. That’s where Gift of Life comes in.
Gift of Life revolutionized donor recruitment when it became the first registry to collect cheek swabs in lieu of blood samples at donor drives. This innovation transformed the way donors became registered worldwide and has been responsible for significant growth in the global registries.
“Our goal is to be able to say that every patient who needs a transplant is able to get one,” said Jay Feinberg, Gift of Life’s founder. “We don’t want people to have to say, ‘someone please find me a match.’ We see that too often.”
Feinberg knows that feeling well, from personal experience. Over 20 years ago, he had leukemia and needed a bone marrow transplant, but there were no genetically compatible matches in the worldwide registry, due primarily to Feinberg’s ethnicity; as an Ashkenazi Jew, he was genetically underrepresented in the pool of donors.
“So I started a massive campaign to right the wrong and grow the registry, to find a match for me and for others,” Feinberg explained.
What started out as a small grassroots endeavor has been more successful than Feinberg ever dreamed, in the Ashkenazi Jewish community and beyond. After finding his own match – from the last person tested at the final drive he organized – Feinberg continued his mission of diversifying the registry and testing as many people as possible to ensure that all ethnic groups would have equal representation. He is well on his way to making that dream a reality: today, Gift of Life has close to 243,000 registered donors, made over 12,000 matches and facilitated over 2,900 transplants. The organization is one of only two national public bone marrow and blood stem cell registries and is a world leader in facilitating transplants for children and adults suffering from many life-threatening diseases.
Just this year, the volume of donor recruitment drives hosted by Gift of Life has doubled. Historically, the organization has held over 7,000 drives in synagogues and schools across the country, often partnering with Chabad and Hillel on college campuses. Gift of Life also recently launched a new initiative called the Campus Ambassadors program, where students work as interns to recruit donors on college campuses nationwide and raise money to perform the cheek swab tests.
Once a match is identified, the potential donor decides if they want to undergo further testing and proceed with the transplant, a purely altruistic deed that is typically done for a stranger. Such charitable acts of kindness are highly valued and deeply encouraged in everyday Jewish life. In fact, they are a mitzvah.
“In Judaism, there is a moral obligation to help someone if you can,” said Rabbi Efrem Goldberg, senior rabbi at Boca Raton Synagogue. “There is a well-known saying in the Talmud that if somebody saves one person, it is as if he saves the entire world. Being a bone marrow or stem cell donor is an extraordinary opportunity to help save a life and make an unbelievable difference. It’s amazing what one person, Jay Feinberg, was able to accomplish by starting Gift of Life.”
For Struhl, the decision to donate his stem cells was an easy one.
“My parents always taught me that giving back is one of the most important pillars of life,” he said. “I felt blessed that I was given this incredible opportunity to help someone in need. There are hundreds of thousands of people in the database and I was one of the lucky ones who was a match. Gift of Life made the donation process so easy and the experience truly changed my life.”
A graduate of Hillel Day School and Yeshiva High School, Struhl now lives in New York City, where he works as a finance executive. He met Parker during an emotional meeting at Gift of Life’s annual gala dinner in New York last year, and the two have kept in touch.
As for Parker, she’s in awe of Gift of Life and all the selfless donors, especially Struhl. After being so close to the brink of death, she has learned to never take a single moment for granted and cherishes the precious time she has with her family and friends.
“Gift of Life is the vessel for life, and without it, I, along with many others, would have died,” said Parker. “I know I would not be here without the transplant, and every day is a gift. I am so thankful to Jonathan for giving me this gift. When I met him, I felt that he was already part of my family, and I know we’ll always share that close bond.”
Parker and her family were so grateful that they were inspired to pay the kindness forward by getting involved with Gift of Life and helping the cause in any way they could. Parker’s daughter, Cassi Imrie, now serves as a campus ambassador at University of Florida. Her goals are to add 1,000 new donors to the registry and fundraise to help offset the costs associated with testing; since the school year started, she ran her first drive, swabbing 300 people and raising $500.
Struhl has also stayed connected to Gift of Life. After his donation, he spearheaded a young professional’s event where 350 people were swabbed, resulting in one match, and future events are underway as well. He has also introduced several donors and recipients on stage at Gift of Life’s annual gala.
Donors and recipients often correspond with each other and may also meet in person a year after the transplant, depending on the specific case.
Rabbi Greg Kanter of Temple Sinai in Delray Beach, who donated stem cells through Gift of Life last year, has yet to meet his recipient, but is deeply gratified that he had the chance to help someone in such a profound way. He didn’t hesitate when he got a call from Gift of Life telling him he was a match and required some follow-up testing – just days before his wedding in California.
“The Reform movement is very involved with Gift of Life, and this seemed like such a great way to do a mitzvah,” he recalled. “There was some mild discomfort after, but it doesn’t cost you anything and you can do so much good. Gift of Life is amazing -- they make it so easy for the donors and take such great care of you, and you feel terrific about it afterward.”
Rabbi Kanter recently received a touching message from his recipient, which reinforced his positive feelings. “He wrote me a beautiful letter about how he was able to spend more time with his grandchildren. It’s so nice to know that it worked and that he’s grateful. You just can’t put into words how good it makes you feel.”
He wants to spread that goodness to others and is hoping to run a donor drive in his temple this year. “You want everyone you know to get that good feeling too,” he said. “Then you feel like you kept the mitzvah going.”
There are multiple opportunities to help give or spread the Gift of Life. To find out how to get swabbed and other ways to participate, visit giftoflife.org.
Gift of Life will hold its annual Walk for Life fundraiser on January 17, 2016 at 9 a.m. at Florida Atlantic University, 777 Glades Road in Boca Raton. The festive event, dedicated to raising awareness for bone marrow and blood stem cell transplants, will feature a 5K run/walk, the introduction of a transplant recipient and donor, as well as music, food and a kid’s area. Click here for more information.