June 12, 2024
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Funding Desperately Needed Fineman Family and Friends Seek Cure

Fair Lawn—When most parents are waiting with happy anticipation for their children to roll over for the first time, Evan and Robin Fineman learned that their firstborn son, Ezra, had Hyper IgM Syndrome.  This rare primary immune deficiency disorder is genetic and makes Ezra unable to fight off infection. A cure is only possible via a bone marrow transplant, and until that transplant happens and “takes,” Ezra’s exposure to people is greatly limited; he is schooled at home, and cannot have play dates, attend parties or go on outings to crowded places.

“When people learned about Ezra, some of them told us about the Gift of Life Foundation, and we turned to them to help us find someone who might match his bone marrow for the transplant,” said Evan Fineman. The foundation’s mission is to collect DNA swabs from as many people as possible and add them to an international registry. The DNA is collected by swabbing the inside of a person’s cheek and it is used to determine whether a person it is “match” for someone in need of a bone marrow or other transplant. (You may have seen this being done on a number of TV shows like CSI.) The swabbing process takes from 5-7 minutes, with much of the time being used to explain the process. Once the swab is taken, the kit is sent back to the Gift of Life office, where the consent form and potential donor’s medical information are reviewed. The Gift of Life does not charge people for swabbing, although the fee is $60.

One way money is raised to pay for testing is through Walk for Life events. One such walk will take place this Sunday, October 6 at Van Saun Park in Paramus.  Marti Freund, Walk for Life coordinator, said  it’s “A very memorable day where people from all walks of life support a wonderful cause.” Ms. Freund expects between 200 and 250 people to participate and hopes to raise at least $60,000, which would enable 1,000 kits to be processed.

Ezra’s journey speaks to the highs and lows of the transplant process. In 2012, Ezra had a cord blood transplant. After high-dose chemotherapy and nearly three months of isolation in the hospital, the transplant didn’t take. In August 2013, a match was found and Ezra underwent a second bone marrow transplant. On September 7, the Finemans posted the happy news on their blog that the first cells engrafted—the first looked-for sign of success. It marked the beginning of a months-long process of reconstituting Ezra’s immune system.

As the Finemans hope and pray that Ezra’s recent transplant will be a success, they continue to be big supporters of the Gift of Life Foundation. They have launched numerous campaigns to raise funds and have enabled nearly 6,000 people to be added to the registry. From these registrants, 108 matches have been found and 13 have received transplants.

Arnie Spier and his wife Randi, who met the Finemans when they moved into Fair Lawn and became members of Congregation Ahavat Achim, became friendly with the Finemans right away. When Ezra was born, Spier said, “We fell in love with Ezra. We recognized the awful hand that Evan and Robin were dealing with. They were fighting for Ezra’s life.”

The Finemans conducted their first bone marrow drive on behalf of Ezra and other people with immune deficiency disorder at Ahavat Achim. Spier was very impressed with the Gift of Life organization and that a match had the potential to save a life. This inspired him to form “Team Ezra” which is set to join in Sunday’s walk. The team’s original goal was to raise $7,200.  So far, 48 walkers (most of whom are members at Ahavat Achim) have raised over $17,000. Spier has found raising funds easy: “When the chips are down, Ahavat Achim lives up to its name and helps its friends and members.”

Fineman sees the walk as an opportunity to help others and noted that there is a “whole community of people trying to find a match.” Fineman referred to Jay Feinberg, the founder of the Gift of Life, and said, “A lot of people in the Jewish community have problems finding suitable donors, and it really is important to register.”  The gene pool of people of Eastern European descent is under-represented due to the Holocaust, which severed potential blood lines. Fineman adds, “You practically give some blood, and you can save a life. What an impressive thing to do!”

You can still sign join Team Ezra, or just donate to the cause. The cost to walk is $25 for adults and $10 for children and under.  Read more at http://support.giftoflife.org/site/TR/WalkForLife/General?team_id=1730&pg=team&fr_id=1090

To learn more about the Gift of Life, visit http://www.giftoflife.org.   To learn more about Ezra’s story, visit http://curingezra.blogspot.com/.

By Larry Bernstein

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