Mike E. was three and a half. The age of zoom-zooming his trucks across the floor. But Mike wasn’t zoom-zooming. The most frequent sound he emitted was a pitiful whimper as, once again, he was subjected to the painful and frightening hospital procedures. Mike was born with CGD, a disease that damages the immune system. His life was in danger and only a stem cell transplant could help. Finding a donor whose DNA matched Mike’s was vital. With a matching donor, he could live. Without… Continue reading Opportunity Knocked and They Answered
My name is Annalisa T. I am writing from Italy to thank with all my heart the Israeli donor who will try to save the life of my husband Mr Luca B: he will receive a bone marrow transplant between the end of April and the beginning of May at the hospital of Santa Chiara in Pisa, Italy. He is fighting, since May 2017, against a LLA (Leukemia). Continue reading A Thank You Note from Italy
In March 2018, Ezer Mizion’s Bone Marrow Registry facilitated THIRTY lifesaving stem cell transplants – for a total of 2,772 lives saved to date!
Patients were from the following countries:Belgium, Canada, Finland, France, Germany, Israel, Italy, Netherlands, Turkey, UK, USA
Of these, 23 were from personalized donor pools located in USA, UK, Canada, Israel, Brazil, Switzerland .
Below are the sponsors who saved lives this month, with the total number of transplants done by their donor pool.
ABS Settlement Donor Pool –10 lives saved! Adiram Donor Pool –1 life saved! Anonymous CF Donor Pool –12 lives saved! René & Susanne Braginsky Donor Pool –3 lives saved! Brazil Community Donor Pool –126 lives saved – 4 this month! Damaghi Family Donor Pool –45 lives saved! El-Ad Modiin Community Donor Pool –1 life saved! David & Sara Farajun Donor Pool –102 lives saved – 3 this month! Hole In One Donor Pool –36 lives saved – 2 this month! Hope4Adam Donor Pool –3 lives saved – 2 this month! Charles Kushner Foundation Donor Pool –7 lives saved! Michael & Evelyn Levy Donor Pool –1 life saved! Neal & Nicci Menashe Family Donor Pool –2 lives saved! Israel & Edith Pollak Donor Pool –15 lives saved! Ira & Ingeborg Rennert Donor Pool –136 lives saved! Sakhaie Family Donor Pool –1 life saved!
Can one even begin to imagine the helplessness of being in a plane thousands of feet in the air when the plane is no longer responding to the control mechanisms? You – a tiny speck in the vast sky – and the hitherto dependable controls now no more than bits of disconnected metal and plastic… alone… exposed…powerless. David Ivry, former Israel Ambassador to the United States, the ninth commander of the Israel Air Force and the first director of the Israel’s National Security Council was a man used to being in control. Yet, he tells of his experience in the scenario described above. “It seemed to be all over. Then I remembered I had one chance: the ejection seat. I used it and I was saved.” Continue reading The Boeing Corporation Saves Lives
This was number five. We were experienced. My husband had the bris (circumcision) details taken care of within 24 hours of the birth while I lay in my hospital bed dreaming of his first day of school, his first two-wheeler… We did not know yet what the doctors already suspected. That he is not expected to live long enough to ride a two-wheeler.
Preparing to feed him on his very first day of life, I noticed a rash on his head and groin. I assumed it was nothing but thought I would point it out to the nurse on duty.
It wasn’t nothing. It was a big something. By the time he was five months, we had learned that the ‘something’ had a name: Wiscott-Aldrich – a hereditary disorder that attacks one out of every million children and affects platelets and immune system cells. The average life expectancy was no more than five years. Unless…we held tight to our chairs. There was an ‘unless’, a ‘maybe’, perhaps some hope in this black, black nightmare we found ourselves in. Continue reading Like Magnet to Metal
December 2017 – BONE MARROW DONOR REGISTRY ACTIVITY SUMMARY
34 lifesaving transplants 21 from personalized donor pools 2,691 total transplants 885,264 members in registry Below are the donor pools that saved lives this month, and their total transplants. Continue reading Because of You!
Imagine having an airplane view of the entire world. Not only the world but of generations. What would you see? You’d immediately notice the hubbub in America as Ezer Mizion launches a nationwide campaign to raise funds to sponsor genetic testing for thousands of new potential donors to register at its Bone Marrow Registry. The money pours in. You all give so generously. The funds are transferred to Israel to pay for the cost of the testing. The genetic data of these young men and women is entered to remain on the database for decades.
A potential donor’s initial contact with Ezer Mizion’s Bone Marrow Registry begins with a cheek swab sample. This will enable the registry to make a preliminary determination regarding the compatibility between the donor and a patient in need of a bone marrow transplant. His genetic information will remain on the database for decades, available for any patient whose DNA matches his. Some potential donors are contacted for further testing within a year of registration, others not for 10-20 years or not at all.
Once it had been determined that a donor is a possible genetic match, things move quickly. When a patient is in need of a bone marrow transplant, time is of essence. Further testing must be done and it cannot wait. Should the patient’s condition deteriorate, the transplant, his last chance to survive, may no longer be medically feasible.
Often, if a great deal of time has elapsed since registration, the contact info is no longer valid. The internet is then surfed until the donor is located. No effort is too much when a human life is involved.
The donor is then asked if he would like to donate. The procedure is entirely voluntary and the donor has the right to refuse at the outset or at any time. No persuasion is used leaving the decision completely up to the potential donor.
In most cases, it is a stem cell transplant rather than a bone marrow transplant that takes place. This is a much simpler procedure which results in a higher percentage of potential donors agreeing to go ahead.
What do we mean by genetic match?
Human leukocyte antigens (HLA) are proteins that are present in most body cells. These antigens help identify tissue types. The immune system utilizes HLAantigens in order to identify the cells that belong in your body and the cells that do not belong in your body. If the immune system detects cells that do not belong on your body, it will reject them, thus resulting in a failed transplant.
HLA proteins are important in determining the compatibility of donors and patients for a stem cell transplant. In order to match tissue types for a transplant, the compatibility of ten of the donor and patient antigens are checked (generally, A, DR, C, B, and DQ).
Usually, a compatibility of at least 8 out of 10 antigens is necessary in order to approve a donor for a transplant.
In addition to the basic testing, Ezer Mizion’s Bone Marrow Registry is committed to supporting research to enhance results of transplants and the donor may be asked to participate in this research as part of the donation process. The decision whether to participate in the research is up to the donor.
Three weeks to several months may elapse until the patient’s attending doctor will come to a decision. The Registry staff will call the donor to inform him of the results of the compatibility confirmatory testing.
The donor may be asked to donate immediately or to wait until the patient is ready. Each case is different; the timing of the donation will be based upon what is best for the donor and for the patient. After a date has been set, the preparatory stage will continue.
At the preparatory stage before the donation, the donor will speak with the Registry staff in order to learn about the process and the risks and side effects involved in giving a donation. If he chooses to donate, he will undergo blood tests and a physical examination by a physician. A detailed questionnaire is also required in addition to a signed consent form.
Increasing Stem Cells in the Donor
On the day of the transplant, blood is taken from the donor, much the same as if he were donating blood. The stem cells are harvested from the whole blood and the remainder returned to the donor through the second arm. The process is repeated for several hours until the required amount of stem cells (depending on the size of the patient) is obtained. So that a large amount of stem cells be available, the donor receives neupogen injections several days before the transplant to stimulate the release of stem cells from the bone marrow into the blood stream.
When the required amount has been accumulated, the stem cells are then infused into the body of the patient through a central line, a painless procedure. Within 2 days to several weeks, the new cells will begin to produce red cells, white cells and platelets in place of the defective ones, thus producing a cure for many life-threatening diseases.
Bone Marrow Registry Anonymity
By international law, a registry must maintain confidentiality and strict non-disclosure of donor and patient information. This policy is for the protection of both the donor and the patient.
In order to maintain confidentiality of information, donors and patients receive an identification number. These ID numbers enable doctors to share important medical information without using names or addresses. This high level of privacy is maintained throughout the stages of the process.
Patients are informed only of the age and gender of their donor. Donors are told only of the age, gender, and disease of the recipient patient.
The patient’s identity may be revealed only after at least a year has elapsed from the date of donation and the patient has expressed his agreement to disclosure and a meeting. This meeting understandably will be highly emotional with the patient and his family trying to express the unexpressable: You saved my life!