Gift of Life Bone Marrow Foundation

Gift of Life Bone Marrow Foundation
Non-profit
Industry Health care
Founded Boca Raton, Florida, USA (1991)
Headquarters Boca Raton, USA
Key people
 Jay Feinberg, CEO
William Begal, Chairman
Website www.giftoflife.org

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.

Gift of Life was the first registry in the world to Human Leukocyte Antigen tissue type bone marrow donors on a mass scale at donor drives using buccal swabs.

History and Background

Gift of Life was founded following a successful bone marrow registration drive to save the life of Jay Feinberg, a 23-year-old analyst with the Federal Reserve.

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.[1]

Gift of Life is a non-profit organization granted tax-exempt status under Section 501(c)(3) of the Internal Revenue Code of the United States. Although it operates a public resource available to patients globally, it does not receive government funding.

The Need to Grow Bone Marrow Registries

Gift of Life is one of two 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. There are 75 marrow and stem cell donor registries from 53 countries, and 53 cord blood registries from 36 countries as of October 2015.[2]

Steps to Becoming a Bone Marrow Donor

Step 1: Joining 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 250 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: Donor Workup and Medical Qualification --- The registry 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: Donating Marrow or Blood Stem Cells --- 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.

Volunteer Network

Program Description: The Volunteer Network is made up of donors, transplant recipients and volunteers whose commitment and enthusiasm translates to greater visibility in the community. The goals of the Volunteer Network are to broaden the public’s recognition of marrow and stem cell donation, engage the community in its work, serve as donor and patient advocates, and boost financial support by cultivating new sources of revenue which enable more donors to be tested.

Who Are Volunteer Network Members: Volunteer Network participants 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 the need for marrow donors in the community. As representatives of the cause they increase public awareness of the life-saving mission and enlist others to join the registry so that more patients can find the matches they need, when they need them.

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.

References

General
Specific
  1. ↑ Day of Hope for Those Dying of Leukemia, New York Times, December 16, 1991. Last accessed March 13, 2009.
  2. ↑ http://www.bmdw.org

External links

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