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Urgency of minorities in The National Bone Marrow Registry

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Guardian Angel Council, Certified Race Directors

THE URGENCY

Ethnic minorities face unique challenges finding a match in the Be the Match Registry ®. Bone marrow donors must be matched to very specific genetic markers which are likely to appear in donors of the same race & ethnicity. Even with full-blooded siblings, the possible combinations of Human Leukocyte Antigens (HLA) make the chance of a match about 35%.

Be the Match Minority Statistics 2014

FREQUENTLY ASKED QUESTIONS ABOUT THE REGISTRY

Below are some of the most frequently asked questions about the registry. To view this as a PDF, simply click here.

Q: Why is there a need for people to join the Be The Match Registry?
A: Thousands of patients with blood cancers like leukemia and lymphoma, sickle cell and other life-threatening diseases depend on the Be The Match Registry® to find a match to save their life.

Patients need donors who are a genetic match. Even with a registry of millions, many patients cannot find a match. Donors with diverse racial or ethnic backgrounds are especially needed.

Q: If I am between the ages of 18 and 44, why am I more likely to be called to donate?
A: If you are between the ages of 18 and 44, patients especially need you. Doctors choose donors based on what is best for their patient. When more than one potential donor is a good HLA match for a patient, doctors will also consider other factors, including the donor’s age. Research shows that cells from younger donors lead to more successful transplants. Doctors choose registry members ages 18-44 more than 90% of the time.

Q: Can I still join if I’m over age 44?
A: Yes. If you are between 45 and 60, meet health guidelines and are willing to donate to any patient in need, you can join the registry. You may still be called upon as a match for a patient. You will need to join online with a $100 tax-deductible payment at www.bethematch.org/join. This fee is the cost to add a new member to the registry. As a nonprofit organization, we need to be wise stewards of the generous funding we receive. Since transplant doctors request donors ages 18-44 more than 90 percent of the time, we are focusing our resources on growing the best registry possible for patients.

Only those between the ages of 18 and 44 can register at marrow registry drives.

We also invite you to help in other life-saving ways, such as making a financial contribution, volunteering or spreading the word about the need for younger registry members. However you choose to become involved, you give all patients more hope for a cure. We thank you!

Q: If I’m over 60, why can’t I join?
A: The age guidelines are in place to protect donors and provide the best treatment for patients:

• Donor safety: As one ages, the chances of a hidden medical problem that donation could bring out increases, placing older donors at increased risk of complications. Since there is no direct benefit to the donor when they donate, for safety reasons we have set age 60 as the upper limit. It is important to note that the age limit is not meant to discriminate in any way.

• To provide the best treatment for the patient: Research shows that cells from younger donors lead to more successful transplants.

Q: I’m already on the NMDP Registry. Do I need to join the Be The Match Registry, too?
A: Be The Match Registry is the new name for the National Marrow Donor Program® (NMDP) Registry. If you joined the NMDP Registry, either in person or online, you are a member of the Be The Match Registry and do not need to join again. The name has changed, but the goal is still the same. As a member of the Be The Match Registry, you could be the
one to save a life.

Q: What is a bone marrow transplant?
A: Bone marrow transplant is a life-saving treatment for people with blood cancers like leukemia and lymphoma, sickle cell and other life-threatening diseases. First, patients undergo chemotherapy and sometimes radiation to destroy their diseased marrow. Then a donor’s healthy blood-forming cells are given directly into the patient’s bloodstream, where they can begin to function and multiply.

For a patient’s body to accept these healthy cells, the patient needs a donor who is a close match. Seventy percent of patients do not have a donor in their family and depend on the Be The Match Registry to find an unrelated bone marrow donor or umbilical cord blood.

Q: How do I become a bone marrow donor?
A: The first step to become a bone marrow donor is to join the Be The Match Registry. Doctors around the world search our registry to find a match for their patients. If a doctor selects you as a match for a patient, you may be asked to donate bone marrow or cells from circulating blood (called PBSC donation).

Q: Why is there sometimes a cost associated with joining the registry?
A: The total cost to add a new member to the Be The Match Registry is about $100. This includes the cost of the testing needed to match donors to searching patients and related costs.

Be The Match relies on financial contributions to help cover the costs of adding members to the registry. Others have contributed toward the costs for you to join today. However, there are not always enough funds to cover the numbers of donors needed, so sometimes new members are asked to pay some of the registration costs when they join.

Your contribution will make it possible for more people like you to join in the future. Every gift helps make life-saving transplants a reality for more patients.

Q: How do I use the registration kit to collect a cheek cell sample?
A. When you join the registry, you will use our registration kit to give a swab of cheek cells. We will tissue type the sample you provide and use the results to match you to patients. If you join in person at a donor registry drive, the Be The Match representatives can explain how to use the swab kit. If you join online, you will receive your kit in the mail. Instructions are included in your kit.

Q: What is my commitment if I join?
A: When you join the Be The Match Registry, you make a commitment to:

• Be listed on the registry until your 61st birthday, unless you ask to be removed
• Consider donating to any searching patient who matches you
• Keep us updated if your address changes, you have significant health changes or you change your mind about being a donor
• Respond quickly if you are contacted as a potential match for a patient.

You have the right to change your mind about being a donor at any time. Donating is always voluntary.

If you decide you do not want to donate, let us know right away. That way we can continue the search for another donor without dangerous delays for the patient.

Q: Why does a person have to be 18 to join? Can’t my parent sign the consent for me?
A: An individual must be 18 to donate because donation is a medical (for PBSC donation) or surgical (for marrow donation) procedure and the person undergoing the procedure must legally be able to give informed consent. A guardian or parent cannot sign a release or give consent for someone under age 18, because unrelated marrow donation is a voluntary procedure and is not directly beneficial or life-saving to the volunteer donor.

Q: If I join the Be The Match Registry, how likely is it that I will donate to someone?
A: Doctors choose donors based on what is best for the patient. On average, one in every 540 members of Be The Match Registry in the United States will go on to donate bone marrow or peripheral blood stem cells to a patient. We cannot predict the likelihood that an individual member will donate because there is so much diversity of tissue types in the population. However, doctors choose donors between the ages of 18 and 44 more than 90% of the time. That’s because research shows
cells from younger donors lead to more successful transplants. Every person who joins the registry gives patients hope, and new patient searches begin every day. You may never be identified as a match for someone, or you might be one of a number of potential matches. But you may also be the only one on the registry who can save a particular patient’s life.

Q: Does race or ethnicity affect matching?
A: Racial and ethnic heritage are very important factors. Patients are most likely to match someone of their own race or ethnicity. Today, there simply aren’t enough registry members of diverse racial and ethnic heritage. Adding more diverse members increases the likelihood that all patients will find a life-saving match. Members of these backgrounds are especially needed:

• Black or African American
• American Indian or Alaska Native
• Asian, including South Asian
• Native Hawaiian or other Pacific Islander
• Hispanic or Latino
• Multiple race

Q: What is the donation process like?
A: Adult donors may be asked to donate in one of two ways:

• Bone marrow donation is a surgical procedure in which liquid marrow is withdrawn from the back of the donor’s pelvic bones using special, hollow needles. General or regional anesthesia is always used for this procedure, so donors feel no needle injections and no pain during marrow donation. Most donors feel some pain in their lower back for a few days afterwards.
• Peripheral blood stem cell (PBSC) donation involves removing a donor’s blood through a sterile needle in one arm. The blood is passed through a machine that separates out the cells used in transplants. The remaining blood is returned through the other arm.

Q: Can I get tested for a specific patient or family member?
A: When you join the Be The Match Registry, you make a commitment to consider donating to any searching patient who matches you. As a volunteer, you are never under any legal obligation to donate and your decision is always respected. However, because a late decision not to donate can be life-threatening to a patient, please think seriously about your commitment before deciding to join our registry.

You can request a copy of your own testing results after you join the Be The Match Registry. However, if you want to be tested only for a specific patient, you will need to have your testing done privately. You can contact the patient’s transplant center or transplant doctor for more information.

Q: I’ve already been tested for a family member. How can I add my results to the Be The Match Registry?
A: Get a copy of your human leukocyte antigen (HLA) tissue typing lab report and contact the donor center in your area. You will need to fill out a health history form to verify you meet medical guidelines. You will also need to sign a consent form agreeing to be listed on the Be The Match Registry. Once you are listed on our registry, we will contact you if you are identified as a possible match for a patient.

Q: I think I may have already joined. How can I verify that I am on the registry?
A: Be The Match Registry is the new name for the National Marrow Donor Program (NMDP) Registry. Whether you joined the NMDP Registry or Be The Match Registry, online or in person, you are part of the same registry and do not need to join again. If you have previously given a blood sample or cheek cell sample to be tested for the registry, you do not need to join again.

If you are unsure whether you joined, you can contact Be The Match at 1 (800) 627-7692.

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