Be the Match Registry

12360We have gotten many generous and gracious offers and suggestions for donating stem cells. Like you, it makes sense, at least from our rudimentary knowledge of genetics, that a similar heritage leads to more possible matches. But turns out, there are still so many variants that a good match is still very very difficult to find. Testing to see if it might match Shann’s typing would have to be done by a private lab, at a cost of about $250 per test. We’re told, that even if your heritage is similar, that having the exact genetic variants to help Shann, are slim. Shann has a rare allele called HL_DRE3 , and this is the one that is hard to match. They are doing some further testing on Mariya and Elena (who are not good matches) to investigate this allele and its properties further.

So the bottom-line is basic: Here is the web site with all the information.

‘Be the Match’ http://marrow.org/Home.aspx

It is set up for people to become stem cell donors in a world-wide stem cell bank.  It is a great thing for anyone who wants to be a stem cell donor to get on this registry, with the knowledge that they are offering to donate stem cells for a person in need anywhere in the world.

BTMdiversitygraph_webGiven what we now know about the world of stem cell transplants, we would like to again encourage anyone over 18 and under 45ish+- to sign up as a potential donor (especially if you are of mixed African/American, native  American or Hispanic blood lines; because those groups have very low donation rates).  It costs you nothing; it’s simple and easy, and it could well save a person’s life.  Also a good time to remind ourselves that giving blood is a gift of strength and life, from you to someone who needs it.  Finally, donating or asking your pregnant friends to donate the umbilical cord from their successful birthing can provide life sustaining blood cells for those without good stem cell matches.

imagesThe main thing now is to thank those of you who have asked and been willing to donate stem cells, especially on the possibility that your similar heritage could make a difference. It is deeply appreciated and the best thing you could do is to get on the Be the Match Registry, if that idea moves you. Thank you.

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7 comments on “Be the Match Registry

  1. I signed up on the marrow registry decades ago; do you know if that would still be on file, and is that the same as stem cells? (misc17@musetta.us)

    • Stephanie — I am a bone marrow transplant survivor and am an advocate for Be the Match. Once your information is entered into the registry it will stay there until you are 61. If you want to double check, contact Be The Match and ask them to confirm that you are still listed. And yes — donating bone marrow and donating stem cells are the same.

  2. Dear Shann: I attended a Be the Match Bone Marrow Donor drive at University of Maine this week. We signed up 87 students. I stood there as a survivor and talked about you and all the others who need matches. I told them they could be the one. If not for you, for someone else. I told them that my donor came from the registry and that I will turn 9 next week. They were amazed. And they signed up. We’re out here working for you my friend. Every day.

  3. Same here ( to old) but I am spreading the word to sign up and donate. Many prays and love sent your way

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