What would you do if your child was sick and doctors told you his or her only chance of survival was finding a perfect bone marrow match?
You'd probably want to shout from the top of every mountaintop that everyone should run and get swabbed. You'd probably want to plaster signs everywhere, paint billboards and pitch every news organization to run a story about your child's need.
And if you knew there were thousands of swab kits that needed to be sent to the lab and added to the international bone marrow registry, you'd probably want to raise all of the money yourself, as fast as you could, to clear those kits -- immediately.
That's the reality families, friends and colleagues often go through when their loved one is diagnosed with leukemia, lymphoma -- or any other cancer or genetic disease -- where the hope of a cure relies on a bone marrow or peripheral blood stem cell transplant.
That's what my friends Hindy Poupko and Seth Galena went through when their daughter, Ayelet, was diagnosed with dyskeratosis congenita, a rare bone marrow failure disorder, just before she turned one.
Ayelet's parents worked with the Gift of Life Bone Marrow Foundation (www.giftoflife.org) to find their only child, her lifesaving match. They organized bone marrow donor recruitment drives around the country and raised more than $330,000 to pay for cheek swab kits to be sent to the lab -- hoping their daughter's match would be one of them. Celebrities like 50 Cent, Pharrell, Rhianna and Leighton Meester supported their campaign by tweeting, blogging and getting swabbed themselves. Ayelet's blog, Eye on Ayelet had 14,000 unique hits a day. Her Ayelet Galena Fan Page on Facebook has more than 5,000 fans.
After months of searching, the Gift of Life was able to identify a close match for Ayelet and she received a successful transplant at Cincinnati Children's Hospital. But on January 31, 2012, we all woke up to news we never wanted. Her parents posted for the world to read that Ayelet lost her battle due to complications.
There's no doubt about it. We lost a hero that day.
Hindy's and Seth's bone marrow campaign for Ayelet not only led them to the close match they found for her transplant, but it also produced 51 matches for other patients in need of a transplant and eight completed transplants.
The way it works is once someone gets swabbed, it costs the Gift of Life $60 to process that kit. As donations come into the Gift of Life, kits are sent to the lab; however, as I write this, the organization still has thousands of kits waiting to be cleared. Ayelet's perfect match could be one of them.
Ezra Fineman's match could be another.
Ezra is three years old and was diagnosed with a rare primary immune system disorder called Hyper IgM Syndrome, when he was five months old. The disorder prevents his body from producing antibodies to fight infection. Doctors have told Ezra's parents a bone marrow or stem cell transplant is their son's only hope for a cure. Since no one in Ezra's family is his match, and no match has been found in the worldwide registries, Ezra's parents contacted Gift of Life to help them hold recruitment drives. Two years later, Ezra's Gift of Life donor circle has registered more than 4,500 potential donors and has found matches for nearly 60 other patients in need. Sadly, no bone marrow match was found for Ezra.
His parents made the difficult decision of using a mismatched umbilical cord blood unit as the stem cell source, and Ezra received his transplant this past May. It is currently uncertain whether the transplant is working. He still may need to find his miracle bone marrow match -- and time is not on our side.
That's why we're holding The Marrow Match Gala on November 18th at The Liberty Theater in New York City. I've organized a committee of more than 100 people to help us clear these kits. Our team consists of my family, friends, physicians, cancer survivors, bone marrow donors and recipients. Kelly Rutherford from Gossip Girl is our host. We produced a celebrity music video to help us spread the world and motivate everyone who sees it, or hears about what we're doing, to get involved.
The video is set to Bon Jovi's "We Weren't Born to Follow" and features New York City Mayor Michael Bloomberg, Larry King, Wendy Williams, Nick Cannon, Amar'e Stoudemire, Henrik Lundqvist, Kris Humphries, Ivanka Trump, NY1 News anchors, Carmen Marc Valvo, Stephanie Winston Wolkoff, The MOMS, The Naked Cowboy and many other famous faces -- including our honorees and committee members.
We received donations from all over the world, including a gift from the Stella Liniado Rainbow Foundation. Stella's parents donated money for us to clear 500 kits in memory of their daughter, who died when she was 6. We also received a gift from Michael Stoler, President and CEO of the Foundation for Medical Evaluation & Early Detection, to clear another 500.
I think more people would get swabbed if they had a better understanding of what it means to be a donor. As I've been working on this event, here are the top questions people have asked me over the past six months.
What is the Gift of Life Bone Marrow Foundation?
The Gift of Life Bone Marrow Foundation is a 501(c)(3) non-profit organization started more than 20 years ago as a grassroots movement to save the life of Jay Feinberg. 60,000 people were tested over the course of four years on Jay's behalf and his match was found at the very last drive held for him. Once Jay received his successful transplant, he dedicated his life to helping others and founded Gift of Life. Currently, Gift of Life has more than 210,000 volunteer donors in its registry and has facilitated transplants for more than 2,400 patients worldwide. It is accredited by the World Marrow Donor Association and is part of the National Donor Program. "The Gift of Life Foundation is a wonderful organization, with a tremendous commitment to patients, donors and their families," says Gail J. Roboz, Associate Professor of Medicine and Director of the Leukemia Program at Weill Cornell Medical Center and the New York Presbyterian Hospital. "It is horrible to have to tell a patient that we can't find a donor and I look forward to the day when that conversation will never happen," says Dr. Roboz.
Is giving bone marrow painful?
I, like so many people, thought being a bone marrow donor was a dangerous and painful process where the doctor inserts a needle into your pelvic bone to extract bone marrow. Dr. Usama Gergis, Assistant Professor of Medicine at Weill-Cornell Medical College, says, "Doctors do not really transplant bone marrow from one patient to another. Rather, it's blood stem cells that are extracted from the marrow. Nowadays the majority of transplantation procedures utilize stem cells that are collected from peripheral blood, much like a simple blood donation."
What does it mean to be someone's match?
In order to be someone's match you have to have a tissue-typing sample performed by a simple cheek swab. Then your Human Leukocyte Antigens (HLA) is entered in a database that is accessible to all transplant registries throughout the world. If you get contacted because your blood stem cells are needed to save someone's life, you'll undergo a complete history and physical examination by a stem cell transplant specialist, including blood work to determine your eligibility for the procedure.
What does the peripheral blood donation process entail?
Dr. Gergis says, "Once you are cleared for the peripheral blood stem cells collection and a date is determined for the procedure, you receive a simple subcutaneous (under the skin) injection for four days and on the fifth day you come to the designated collection center for the procedure. The collection procedure itself is done through two veins in your arm, where the blood goes out one arm through a stem cell separating machine and then the blood returns back to you through the other arm. This donation process takes approximately four hours." According to Dr. Gergis, most donors experience a mild body ache similar to flu-like symptoms during the four days leading up to the collection day.
What are your chances of being someone's match?
Generally, the odds of a potential donor becoming an actual donor are 1 in 200. In other words, if you undergo a cheek swab, you have a chance of 0.5 percent of being called upon to undergo blood stem cell collection. In trying to understand the mystery behind what determines the "matching" between a donor and a patient, Dr. Gergis explains it as follows. "Our immune system is controlled by a set of genes inherited on chromosome number 6. These genes determine our genetic code, which is closely restricted by our ethnic background. For a donor/recipient pair to match, they have to possess the same code. This becomes particularly challenging for ethnic minorities who have a more diverse background and in turn a more diverse genetic code." Dr. Gergis points out that, "After more than 15 years of follow up of healthy donors, there are no known long-term adverse effects to stem cell donation. Moreover, donors can donate stem cells more than once as we have an infinite number of stem cells and we do not run out."
How can I help?
- get swabbed to see if you are a match
- donate at http://www.giftoflife.org/Pages/Supporters.aspx to clear a kit to match someone else or
- sign up to attend the gala in New York City on November 18th at www.marrowmatchgala.com.
We will be holding a Drive for Hurricane Sandy relief efforts at the gala for anyone who would like to donate cleaning supplies or gently-worn, winter clothing.
For more information about the Gift of Life, you can visit www.giftoflife.org.
You could be someone's lifesaving match or clear the one kit today that will save someone's life tomorrow.