Gift of Life Marrow Registry

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Gift of Life Marrow Registry
Non-profit
IndustryHealth care
FoundedBoca Raton, Florida, USA (1991)
HeadquartersBoca Raton, USA
Key people
Jay Feinberg, CEO
Stephen Siegel, Chairman
William Begal, Chairman Emeritus
Websitewww.giftoflife.org

The Gift of Life Marrow Registry 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 is a non-profit organization granted tax-exempt status under Section 501(c)(3) of the Internal Revenue Code of the United States.[1] Although it operates a public resource available to patients globally, it does not receive government funding.

History and background[edit]

Gift of Life was founded following a successful bone marrow registration drive to save the life of Jay Feinberg, a 22-year-old analyst with the Federal Reserve.[2][3]

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. 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. Unfortunately, the worldwide registry was not representative of all ethnic groups. There was an urgent need to add diversity to the registry, and time was of the essence.[4]

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 more than 90 marrow and stem cell donor registries in 56 countries.[5]

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.

Since its inception in 1991, Gift of Life has found 17,888 matches and facilitated more than 3,645 bone marrow transplants. More than 370,000 donors are currently registered with Gift of Life. [6]

Collection[edit]

Bone Marrow:[7] 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):[8] 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[edit]

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.

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.

Gift of Life – Be the Match Collection Center[edit]

In April 2019, Gift of Life opened the Dr. Miriam and Sheldon G. Adelson Gift of Life - Be the Match Collection Center in collaboration with the Be The Match Registry at its Florida headquarters[9]. The Collection Center primarily collects blood stem cells from donors for transplant into a patient. The stem cells are taken by a courier to the patient’s transplant center. Gift of Life is the first Registry to operate its own in-house collection center.

Other United States registries[edit]

The National Marrow Donor Program (NMDP) is a nonprofit organization founded in 1986 and based in Minneapolis,[10] that operates the Be The Match Registry of volunteer donors and cord blood units. In May 2004, the Gift of Life Marrow Registry and the NMDP formed an associate donor registry relationship together.

References[edit]

  1. ^ "Financials". www.giftoflife.org. Retrieved 2019-11-20.
  2. ^ "Cancer battle spurs entrepreneur to start donor registry". Reuters. 2011-07-13. Retrieved 2019-11-20.
  3. ^ Stone, Judy. "What You Need To Know On World Bone Marrow Day". Forbes. Retrieved 2019-11-20.
  4. ^ [1] Day of Hope for Those Dying of Leukemia, New York Times, December 16, 1991. Last accessed March 13, 2009.
  5. ^ "Database".
  6. ^ Gift of Life Marrow Registry (About Us) (n.d.). Retrieved June 30, 2020, from https://www.giftoflife.org/page/content/aboutus
  7. ^ "Donation Frequently Asked Questions". bloodcell.transplant.hrsa.gov. Retrieved 2016-06-26.
  8. ^ "Donation Frequently Asked Questions". bloodcell.transplant.hrsa.gov. Retrieved 2016-06-26.
  9. ^ https://www.hpnonline.com/home/article/21077318/firstever-integrated-stem-cell-collection-center-opens-in-florida Retrieved July 17, 2020
  10. ^ Confer, D.; Robinett, P. (August 2008). "The US National Marrow Donor Program role in unrelated donor hematopoietic cell transplantation". Bone Marrow Transplantation. 42 (1): S3–S5. doi:10.1038/bmt.2008.102. ISSN 1476-5365. PMID 18724295.

Further reading[edit]

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