One Up For Dac
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FAQ
If any of your questions are not answered below, please do not hesitate to contact Susan Hardisky for more information:
Phone: 724-856-0322
Email: OneUpForDac@gmail.comQ: If I join the National Registry, will I be tested for Dac?
A: Dac donor will most likely be pulled from the National Registry. They have already started the search, but will continue checking the newest additions to the registry. The process of joining the National Registry takes approximately 8 weeks once the swab is mailed back to the National Donor Program. We do not know how urgently Dac will need will need his closest match, so we are asking everyone who is entering the National Registry to do so as soon as possible so Dac will have a chance to be tested again everyone we have entering. As of right now, Dac does not have a perfect match, but depending on how critical his situation becomes, they may use the closest match instead.
Q: If I don’t want to join the National Registry can I still be tested for Dac?
A: Yes. A kit can be ordered at BoneMarrowTest.com. The cost per kit is $175 and the family is happy to help with funding. Please contact OneUpForDac@gmail.com / 724-856-0322 for questions or funding information. This kit tests specifically against Dac only, without automatically registering into the National Registry.
Q: I am either under age 18 or over age 60. Can I still be tested for Dac?
A: Yes. The National Registry has age limitations, however, we are also conducting private testing for Dac, which has no age or health restrictions to be tested. It is $175 per kit, which can be ordered at BoneMarrowTest.com and the family is happy to help with funding. Please contact OneUpForDac@gmail.com for any questions or funding information. This kit tests specifically against Dac only, without automatically registering into the National Registry.
Q: I am not eligible, for health reasons, to enter the National Registry. Can I still be tested for Dac?
A: Yes. The National Registry has health limitations, however, we are also conducting private testing for Dac, which has no age or health restrictions to be tested. It is $175 per kit, which can be ordered at BoneMarrowTest.com and the family is happy to help with funding. Please contact OneUpForDac@gmail.com for any questions or funding information. This kit tests specifically against Dac only, without automatically registering into the National Registry. Please note that with any conditions it is best to have your doctor’s approval before being tested.
Q: I tried to join the National Registry, but it wasn’t free.
A: Use promo code PIF070109 for your free kit
Q: How do I fill out the form I received in my Private Testing Kit?
A: There is VERY IMPORTANT INFORMATION about Dac needed when filling out the Private Testing form. You will need to contact Susan Hardisky by email or phone for this important information, before sending mailing in your kit. If you send an email, please write “URGENT” in the subject line for an immediate response. OneUpForDac@gmail.com or 724-856-0322
Q: I don’t live near Dac. Can I still be tested for him?
A: Yes. Anyone can be tested and have a kit shipped to directly to them. A donor can come from anywhere in the world.
Q: Does race or ethnicity affect matching?
A: Yes. Someone with a similar ethnic background has better odds of being a match for Dac. He is 50% Italian, so someone with any Italian heritage may have a slightly higher chance of matching Dac, however due to the other 50% being a mix of ethnicities, his match is not guaranteed to have an Italian heritage. Therefore, it is impossible to pinpoint the perfect candidate. ANYONE could be a potential match for him.
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: If I join the Be The Match Registry, how likely is it that I will donate to someone?
A: 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 in the population. However, if you are between the ages of 18 and 44, you are 10 times more likely to be called as a marrow donor than other members of the Be The Match Registry. 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: What is the donation process like?
A: Adult donors may be asked to donate in one of two ways:
- Peripheral blood 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.
- 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.
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: Why are younger donors preferred for the National Registry?
A: If you are between the ages of 18 and 44, patients especially need you. 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. That’s because younger donors produce more and higher-quality cells than older donors.
However, if you are between the ages of 18 and 60, meet health guidelines and are willing to donate to any patient in need, you are still welcome to join the registry.
Q: If I’m over 60, why can’t I join the National Registry?
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. That’s because younger donors produce more and higher-quality cells than older donors.
Q: Why does a person have to be 18 to join the National Registry? 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.
