|Participants in last year’s local Walk for Life.|
If charity walks are becoming increasingly frequent, that does not lessen their value, according to Robin Fineman of Fair Lawn.
She knows this from firsthand experience.
Fineman – whose 4-year-old son, Ezra, recently underwent a stem cell transplant – says that efforts like the upcoming Walk for Life, sponsored by the Gift of Life Foundation, do more than just raise awareness.
They also encourage people to join the group’s registry – which entails just a simple cheek swab – and help raise the funds needed to pay for processing the results.
“It is so critically important to continue to raise money to process donor test kits,” Fineman said. “The more kits processed, the more lives saved.”
Since 2010, Evan and Robin Fineman searched for a bone marrow donor for Ezra, who was diagnosed at 5 months with the primary immune deficiency Hyper-IgM Syndrome – the inability to fight off infection.
“We did everything we could to find a match,” Fineman said, noting that nearly 6,000 people registered on Ezra’s Gift of Life Bone Marrow Foundation donor circle (www.giftoflife.org/help4ezra). To date, that site has found matches for 107 other patients in need, resulting in 12 transplants. Ezra himself did not fare as well, at least until now. Lacking a donor, he had an unsuccessful transplant in May 2012, using umbilical cord blood cells.
Now, finally – after what appears to be an initially more successful effort using a partially matched donor – Ezra seems to be moving in the right direction.
“Every patient should have the option of a cure, and that is only possible if donors continue to be added to the registry,” Fineman said. “When we found out that there is a lack of funding to process all of the donor test kits, we were devastated, and worked as hard as we could to help raise money to process as many kits as possible in the hopes of finding a match for Ezra and other patients in need.
“The diagnosis of an immune deficiency or a blood cancer is devastating enough,” she continued. “The last thing a patient and his or her family should have to worry about is holding drives and fundraising to find a match. Gift of Life’s mission is to find matches for any patient in need. Our greatest hope, after Ezra being cured, is for that mission to come to fruition.”
On her blog, curingezra.blogspot.com, Fineman noted the proximity of Ezra’s transplant to Rosh Hashanah. Indeed, they celebrated the growth of new donor cells by writing “New year, new life.”
“This process feels like a marathon with hurdles every few miles that need to be overcome to reach that far-off finish line,” she wrote. “For now, we rejoice in the hurdles that Ezra has soared over in this race for a cure.”
Best of all, she and her husband are starting to see some small improvements.
“We have seen glimpses of his personality coming back,” she said. “It’s like watching your child be reborn…. He needs to do a lot of healing, but we’re confident that we will get him there soon enough.”
Marti Freund, a development associate at Gift of Life, said this year’s 5K Walk for Life, the second to be held in New Jersey, will include what has become a tradition at the event: a donor and a recipient will meet for the first time. Judging by Fineman’s comments, the reunion will be joyous.
“We wish we could thank Ezra’s miracle donor, the reason this is all happening,” she wrote in her blog. “The rules require that we wait one year before contact, and then only if both donor and recipient mutually agree. What a gift she has given us – the gift of hope, the gift of life for Ezra and for us all.”
The Gift of Life Foundation was created by transplant survivor Jay Feinberg in 1991. Diagnosed with leukemia at the age of 22 and unable to find a match within his family, he turned, without success, to a public bone marrow registry. Still unable to find a match, Feinberg’s family and friends began a “Friends of Jay” movement to educate people and get them tested.
After testing some 60,000 people, “The last person tested – literally – turned out to be his match,” said Freund, adding that “Jay vowed if he survived the transplant, this would be his mission in life.”
Today, Feinberg heads an organization that has facilitated more than 2,600 transplants worldwide. Through its international registry, now containing 230,000 names, the Gift of Life Foundation helps children and adults suffering from leukemia, lymphoma, other cancers, and genetic disorders find matching donors for blood stem cell and bone marrow transplants.
Freund said that while swabs may be done on people between the ages of 18 and 60, the great majority of those actually called for donations are under 45. “We know that transplant centers around the world want younger, healthier donors,” she said.
The Gift of Life has partnered with Birthright Israel, registering thousands of donors through that organization, she added.
“We don’t require donors to pay for [the processing of] their own swabs,” she said, noting that all monies raised at the walks, which began four years ago in Boca Raton, are used to process swabs taken at the drives.
This year’s New Jersey walk – which will be followed by entertainment and refreshments – will take place Sunday, October 6, at Van Saun Park in Paramus, rain or shine. Registration for adults is $25; $10 for children 12 and under. Last year’s walk raised $50,000, Freund said, and there is no fundraising requirement for participants.
“It’s open to everybody,” she said, adding that even people who don’t register to walk can just come to join the bone marrow registry. To date, through such walks, 33 matches for patients in need have been found.
Fineman said that her synagogue, Congregation Ahavat Achim in Fair Lawn, has formed a team to walk in Ezra’s honor, as have several family friends.
“By spending that Sunday with us, you’re giving hope to thousands of patients who need to find matching donors for transplants,” she said. “The money raised is used to process kits. It saves lives.”
On October 13, Eisenhower Park in East Meadow on Long Island will host a similar walk.
For more information about the walks, go to giftof life.org/walkforlife.