Gift of Life Bone Marrow Foundation
||This article appears to be written like an advertisement. (October 2012)|
|Founded||Boca Raton, Florida, USA (1991)|
|Headquarters||Boca Raton, USA|
|Key people||Jay Feinberg, CEO
William Begal, Chairman
The Gift of Life Bone Marrow Foundation is a public bone marrow and blood stem cell registry headquartered in Boca Raton, Florida. Gift of Life facilitates transplants for children and adults suffering from life-threatening illnesses, including leukemia, lymphoma, other cancers and genetic diseases.
Feinberg was diagnosed with leukemia in 1991, and from 1991 to 1995 a campaign was organized to register new donors. He was told that a transplant could save his life, but he would die because he couldn't find a matching donor. A patient's best chance of finding a genetic match lies with those of similar ethnic background. Unfortunately, the worldwide registry was not representative of all ethnic groups, and Jay was Jewish. There was an urgent need to add diversity to the registry, and time was of the essence. Since tissue type is inherited, like eye or hair color, a patient's best chance of finding a genetic match lies with those of similar ethnic background. For Jay, those were donors of Eastern European Jewish descent.
Since May 2004, Gift of Life has had a partnership with the National Marrow Donor Program, through which they share donor databases. Because of Gift of Life's success in the Jewish community, its recruitment strategy and programs have since become a model for other organizations recruiting in minority populations, including Swab a Cheek, Save a Life, founded by transplant recipients Evie Goldfine and Lisa Horowitz, and Sara Jane Harris.
The Need to Grow Bone Marrow Registries
Gift of Life is one of three registries listing unrelated bone marrow donors in the United States. Only 30 percent of patients with diseases treatable with a bone marrow transplant can find a suitable donor among their family members. The remaining 70 percent must rely on the generosity of an unrelated donor to save their lives.
Facts about Gift of Life
- Gift of Life is a North American donor registry dedicated to recruitment within the Jewish community, adding much needed ethnic diversity to the overall donor pool. It was the very first registry in the world with this goal.
- Gift of Life was the first registry in the world to utilize cheek swabs to test donors on a large scale at donor recruitment drives. Gift of Life started this practice in 2001. Since that time, other registries, most notably the National Marrow Donor Program, have begun to recruit with cheek swabs based on Gift of Life's success.
- Gift of Life was the first registry in the world to recruit donors online via its website, back in the year 2000.
- Gift of Life was one of the first registries in the world to transition to the practice of fully typing donors at initial recruitment on a routine basis back in 1999.
- Gift of Life is the only registry in the world founded and directed by a transplant recipient.
How Gift of Life Enrolls a New Donor
Step 1: Enrollment Into the Registry Registration as a potential donor begins with a simple swab of the cheek, known as a buccal swab. This is performed to determine the donor’s Human Leukocyte Antigen (HLA) tissue typing. Prior to the test, the donor must sign a consent form and complete a short health history questionnaire to ensure they are preliminarily eligible to join the registry. Once a donor’s tissue typing is listed in the registry, they become available – anonymously – to patients worldwide in need of transplants through hospitals that conduct donor searches on their behalf, known as transplant centers. Donors must be between the ages of 18 - 60 to join the Gift of Life Registry.
Step 2: Confirmatory Typing When a transplant center identifies a donor they consider to be a suitable match for their patient, they request that Gift of Life obtain a blood sample from the donor for the purpose of “Confirmatory Typing,” which is the next step in the process. Approximately 1 in 100 donors will receive the call that they are a potential match for a patient in need. After further education on the process, and if the donor is willing and eligible to proceed, the donor is sent to a laboratory to have a blood sample drawn which is in turn shipped to the patient’s transplant center to confirm the match. Approximately 1 in 10 donors are called for the third step – Workup – based on the results of the Confirmatory Typing.
Step 3: Workup Gift of Life has relationships with hospitals throughout the United States that serve as its regional collection centers. These hospitals are responsible for conducting a comprehensive physical examination, blood work (including infectious disease testing) and health history screening of the donor. Based on the results from this process, the collection center determines whether the donor is eligible and suitable to donate.
Step 4: Donation Process The collection centers that conduct the physical examinations and medically clear the donors are also responsible for harvesting the bone marrow and collecting the peripheral blood stem cells from the donors.
Two different ways of collecting life-saving material
Bone Marrow: Marrow is found in the hollow cavities of the body's large bones. Donation involves withdrawing 2-3 percent of the donor's total marrow from the iliac crest of the hip, posterior aspect of the donor's pelvic bone. There is no cutting or stitching. The procedure involves a needle aspiration, performed using an anesthetic. Typically, the donor enters a medical center’s outpatient facility in the morning and goes home in the afternoon! Today, bone marrow is requested approximately 20 percent of the time.
Peripheral Blood Stem Cells (PBSC): It is possible to collect stem cells from the peripheral blood rather than the bone marrow. In order to collect a sufficient quantity of stem cells, injections of a medication called filgrastim must be administered. This mobilizes stem cells to travel from the bone marrow into the circulating blood. The stem cells are collected through a procedure called apheresis, which is similar to the process used in platelet donation. A cell separating machine filters out the stem cells, which can then be infused into the recipient. Today, PBSC is requested approximately 80 percent of the time.
There are clinical reasons why one cellular source may be more beneficial for the patient over the other. The transplant physician bases his or her request on this information. If a donor declines to donate via one method, the transplant center may or may not be able to accept the other, based on the clinical needs of the patient.
Gift of Life is a United States non-profit organization granted tax-exempt status under Section 501(c)(3) of the Internal Revenue Code, as well as a Canadian non-profit organization as designated by Revenue Canada. Gift of Life does not receive funding from the government and therefore relies on fundraising to grow its registry of donors. Contributions received by Gift of Life help cover the $60 cost to HLA tissue typing new life-saving bone marrow / blood stem cell donors.
Program Description The Gift of Life’s Ambassadors Program is made up of dedicated donors, transplant recipients and volunteers whose commitment and enthusiasm translates to greater visibility in the Jewish and general communities. The goals of the Ambassador program is to broaden the public’s recognition of the Gift of Life, engage the community in its work, serve as donor and patient advocates, and boost financial support by cultivating new sources of revenue which will enable Gift of Life to maintain and further its mission. A strong, vibrant and active Ambassador Corp increases our recognition in the Jewish community thereby remaining the primary bone marrow registry for Jewish donors and recipients. Ambassadors are available to speak to community groups, organize recruitment drives, provide support to bone marrow donors and patients and plan fundraising activities that benefit the Gift of Life.
Who Are Our Ambassadors Gift of Life Ambassadors are men and women who come from all parts of the country with a variety of backgrounds and interests. Many have been donors, some are transplant recipients and others are volunteers whose dedication and passion translates into spreading the word about Gift of Life in the community. As Gift of Life’s representatives they strengthen our position by increasing public awareness of our life-saving mission and enlist others to join the registry so that we can realize our vision.
Other United States Registries
• The National Marrow Donor Program (NMDP) is a nonprofit organization founded in 1986 and based in Minneapolis, that operates the Be The Match Registry of volunteer donors and cord blood units. In May 2004, the Gift of Life Bone Marrow Foundation and the NMDP formed an associate donor registry relationship together.
• The Caitlin Raymond International Registry, based at the UMass Memorial Medical Center in Massachusetts, turned over its operations to the Be the Match Registry in October 2013, and has ceased to exist. The American Bone Marrow Donor Registry (ABMDR), based in Mandeville, Louisiana, has approximately 32,000 adult volunteer donors.
- Day of Hope for Those Dying of Leukemia New York Times, December 16, 1991. Last accessed March 13, 2009.
- Gift of Life Bone Marrow Foundation introduces Mitzvah Project PRLog.Org, May 2010
- Gift of Life seeks marrow donors at yeshiva, synagogue New Jersey Jewish News, May 2010
- As Fate Would Have It Atlanta Jewish Times, June 2010
- Taglit-Birthright Israel and Gift of Life birthrightisrael.com, March 2010
-  Day of Hope for Those Dying of Leukemia, New York Times, December 16, 1991. Last accessed March 13, 2009.
- Gift of Life Bone Marrow Foundation
- Videos about Gift of Life and Jay Feinberg
- Yeshiva University Honorary Doctorate
- 1995 Article detailing Jay's fight with Leukemia
- Hadassah International World Citizen Award
- National Marrow Donor Program Allison Atlas Award
- Inaugural recipient of the Charles Bronfman Prize