Gift of Life Bone Marrow Foundation
Encyclopedia
The Gift of Life Bone Marrow Foundation is one of the public bone marrow, blood stem cell and umbilical cord blood registries in the United States. Gift of Life facilitates transplants for children and adults suffering from life-threatening illnesses, including leukemia
Leukemia
Leukemia or leukaemia is a type of cancer of the blood or bone marrow characterized by an abnormal increase of immature white blood cells called "blasts". Leukemia is a broad term covering a spectrum of diseases...

, lymphoma
Lymphoma
Lymphoma is a cancer in the lymphatic cells of the immune system. Typically, lymphomas present as a solid tumor of lymphoid cells. Treatment might involve chemotherapy and in some cases radiotherapy and/or bone marrow transplantation, and can be curable depending on the histology, type, and stage...

, other cancers and genetic diseases.

Gift of Life was the first registry in the world to Human Leukocyte Antigen
Human leukocyte antigen
The human leukocyte antigen system is the name of the major histocompatibility complex in humans. The super locus contains a large number of genes related to immune system function in humans. This group of genes resides on chromosome 6, and encodes cell-surface antigen-presenting proteins and...

 tissue type
Tissue typing
Tissue typing is a procedure in which the tissues of a prospective donor and recipient are tested for compatibility prior to transplantation. An embryo can be tissue typed to ensure that the embryo implanted can be a cord-blood stem cell donor for a sick sibling.One technique of tissue typing,...

 bone marrow donors on a mass scale at donor drives using buccal swab
Buccal swab
A buccal swab is a way to collect DNA from the cells on the inside of a person's cheek. Buccal swabs are a relatively non-invasive way to collect DNA samples for testing. Buccal means cheek or mouth....

s.

What Gift of Life Does

Headquartered in Boca Raton, Florida, Gift of Life is one of the nation's public bone marrow
Bone marrow
Bone marrow is the flexible tissue found in the interior of bones. In humans, bone marrow in large bones produces new blood cells. On average, bone marrow constitutes 4% of the total body mass of humans; in adults weighing 65 kg , bone marrow accounts for approximately 2.6 kg...

, blood stem cell and umbilical cord blood registries. Through its work, Gift of Life is a world leader in facilitating transplants for children and adults suffering from many life-threatening diseases, among them leukemia and lymphoma.

History

Gift of Life was founded following a successful bone marrow registration drive to save the life of Jay Feinberg
Jay Feinberg
Jay Feinberg is a leukemia survivor and is the founder and current director of the Gift of Life Bone Marrow Foundation....

, a 23-year-old analyst with the Federal Reserve. When Jay was diagnosed with leukemia and told he would need a bone marrow transplant to survive, he had no idea that his personal journey would result in the establishment of a grass roots organization that would later save the lives of hundreds of patients in need. But that's precisely what happened.

Feinberg was diagnosed with leukemia in 1991, and from 1991 to 1995 a massive campaign was organized to register new donors. Jay's story is one of transforming adversity into success. When he got sick, Jay was told that a transplant could save his life, but he would die needlessly because he would never find a matching donor. He quickly learned the reason why. 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
National Marrow Donor Program
National Marrow Donor Program® Be The Match is the global leader in providing marrow and umbilical cord blood transplants to patients with leukemia, lymphoma and other diseases. The nonprofit organization matches patients with donors, educates health care professionals and conducts research so more...

, 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.

What Makes Gift of Life Different?

  • 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
Human leukocyte antigen
The human leukocyte antigen system is the name of the major histocompatibility complex in humans. The super locus contains a large number of genes related to immune system function in humans. This group of genes resides on chromosome 6, and encodes cell-surface antigen-presenting proteins and...

 (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’s Cord Blood Program

Cord blood transplantation holds tremendous promise in providing a viable treatment option for patients who cannot find matched bone marrow or blood stem cell donors. Cord blood remains in the umbilical cord and placenta following birth, and has a unique tissue type. Although it is usually discarded, cord blood is extremely valuable because it is rich in blood forming stem cells. After a baby's birth, this blood can be collected and frozen to save a life in the future. Since the cord blood is collected after the baby has been born and the umbilical cord has been clamped and cut, the collection is painless, easy and safe for both mother and baby. The normal birthing process is not altered in any way.

Gift of Life's Cord Blood Program is the first such initiative in North America devoted to recruitment from families of Jewish heritage. The program, which will further improve the ethnic diversity of the international donor pool and ultimately lead to more life-saving transplants, is among Gift of Life’s high priority initiatives. Since the launch of the program, thousands of expectant mothers have enrolled through Gift of Life's recruitment center at Boro Park OBGYN and Maimonides Medical Center
Maimonides Medical Center
Maimonides Medical Center is a non-profit, non-sectarian hospital located in Borough Park, Brooklyn. Maimonides is both a treatment facility and academic medical center with 705 beds, and more than 70 primary care and sub-specialty programs...

, in Brooklyn, NY.

Gift of Life Credentials and Honors

Gift of Life is an associate donor registry of the National Marrow Donor Program (NMDP) and a participating member of Bone Marrow Donors Worldwide – the international registry. In addition to its dual accreditations from the NMDP for its marrow donor and cord blood programs, Gift of Life's Cord Blood Program at UMass is accredited by the American Association of Blood Banks (AABB). Gift of Life is accredited by the World Marrow Donor Association, and holds tissue banking licenses in the State of New York.

Other registries and recruitment groups have followed Gift of Life's lead by adopting its ideas and initiatives, and some have turned to Gift of Life in order to seek advice, train with its leadership and take Gift of Life's strategies home with them to implement in their own communities around the world. Gift of Life has helped other minority populations in their recruitment initiatives, and is proud to share its expertise for the benefit of patients everywhere.

Gift of Life has been publicly recognized for its achievements and work helping the Jewish community. Most notably, Gift of Life's founder, Jay Feinberg, is the inaugural recipient of the Charles Bronfman Prize and the National Marrow Donor Program's Allison Atlas Award. Jay is also the recipient of the Hadassah International World Citizenship Award. Most recently, Jay received an Honorary Doctorate from Yeshiva University with Senator Hillary Rodham Clinton.

Fundraising

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 $54 cost to HLA tissue typing new life-saving bone marrow / blood stem cell donors. Gift of Life also fundraises to collect, process, test and store umbilical cord blood in its public cord blood bank
Cord blood bank
A cord blood bank is a facility which stores umbilical cord blood for future use. Both private and public cord blood banks have developed since the mid- to late-1990s in response to the potential for cord blood transplants in treating diseases of the blood and immune systems.Public banks accept...

.

Gift of Life relies both on major gifts as well as smaller gifts. In recent years, the organization has chosen to diversify its fundraising activities to include the use of social media such as Twitter
Twitter
Twitter is an online social networking and microblogging service that enables its users to send and read text-based posts of up to 140 characters, informally known as "tweets".Twitter was created in March 2006 by Jack Dorsey and launched that July...

 and Facebook
Facebook
Facebook is a social networking service and website launched in February 2004, operated and privately owned by Facebook, Inc. , Facebook has more than 800 million active users. Users must register before using the site, after which they may create a personal profile, add other users as...

.

Ambassador Program

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
National Marrow Donor Program
National Marrow Donor Program® Be The Match is the global leader in providing marrow and umbilical cord blood transplants to patients with leukemia, lymphoma and other diseases. The nonprofit organization matches patients with donors, educates health care professionals and conducts research so more...

(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, has approximately 64,000 adult volunteer donors and access to approximately 10,000 cord blood units. The American Bone Marrow Donor Registry (ABMDR), based in Mandeville, Louisiana, has approximately 32,000 adult volunteer donors. The Caitlin Raymond International Registry serves as the search center for the ABMDR.

External links

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