Preliminary search: Have you been contacted?

Posted August 4th, 2011 by Be The Match and filed in Donor Stories
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Laura or another person from Member Services may contact youEvery day about 300 Be The Match Registry® members are sent emails and letters letting them know they have appeared on a preliminary list of potential matches for a patient. If you receive one of these emails or letters, there’s just one thing for you to do — contact us right away.

Here’s why: The patient and their doctor are trying to determine treatment options as quickly as possible. By contacting potential donors early in the search process, Be The Match® provides the patient’s doctors with a more realistic list of possible matches who have indicated their willingness to move forward.

Early contact with potential donors improves
the search process for doctors and patients

In our continual work to improve the donor search process for patients and doctors, Be The Match started the Preliminary Search Donor Contact Program last August. The goal is to contact potential donors most likely to be a patient’s match before the patient’s doctor makes selections for further testing. When outreach is made, registry members whose health or commitment to donate have changed can be removed from the list, and those who are ready and available to go forward can confirm their commitment. This information will be available to patients’ doctors as they select potential donors for further testing, helping to speed up the search process.

Searching for a donor can be stressful and emotional for patients. This program is helping to make the process as easy and positive as possible for the patient in need.

How potential donors are selected and contacted

Registry members who appear on a patient’s preliminary search list are strategically selected for contact.

  • Every day, the National Marrow Donor Program’s search algorithm evaluates preliminary search results for all patient searches submitted that day.
  • The search algorithm identifies a small set of the best potential donors who are listed for patients with fewer than 75 potential matches. The selected donors are placed on a list to be contacted.
  • Potential donors recently contacted for other patient searches are filtered out of the list.
  • Potential donors on this final list are sent emails and letters telling them they’re a possible match and asking them to respond quickly.

Results

We hear back from many of the potential donors promptly and do additional outreach to try to reach those who don’t respond. Results from the program have shown that early contact with potential donors is helping patients find the match they need more quickly.

What to expect when you respond

When you respond to an email or letter telling you that you’ve appeared on a patient’s preliminary search list, we’ll help you understand the donation process.  If you confirm your willingness to move forward, we’ll ask you some questions to rule out health concerns that might prevent you from donating.

Because the search process is in the early stages, the patient’s doctor may or may not request you for additional testing. About one in five donors contacted will be asked to proceed to the next stage.

What we ask of you

If you receive a letter or email saying you are part of a patient’s search results, please contact us right away. It’s usually just a 10-minute call, and we’re here evenings and weekends. Quickly letting us know you’re ready and willing (or not) to move forward is an important way you can help us better serve patients in need.

91 Responses to “Preliminary search: Have you been contacted?”

  1. Rhonda Purdon says:

    I am hoping that if I am ever contacted that I also get a phone call. I am afraid that it might go to my spam mail.

    • wlnelson says:

      I would suggest putting “registry@nmdp.org” in your safe mail lists” to prevent your email system from junk mailing your service request if it comes

      wlnelson

    • Stephanie says:

      my consern also.

    • Sarah says:

      I registered back in 2007 when I was in boot camp and all of my info has changed since then. They tried to contact me but they actually ended up calling my mom because her phone number hasn’t changed and she contacted me. I think they’re able to access your next of kin possibly. But if she had changed her number I never would’ve been called.

  2. Cheryl Phillips says:

    If the e-mail comes from the same site as the news letters, it shouldn’t go to spam but I do have the same concern.

  3. marianne says:

    i have given information and not been contacted !!!!

  4. Danica Dubaich says:

    A few months ago I as contacted as a “possible match. Of course I was thrilled at the thought of possibly being able to help save somebodies life. Unflortunately I wasn’t the 1 in 5 people that acutally donate. The only thing I wish the registry did differently would have done differently was sto contact me saying…”We are unable to use you at this time.” Instead of saying…”I you don’t hear from us in 2-3 weeks we won’t be able to use you as a donor for this patient.”

    To the ladies above when I was contacted I got a phone call and a letter as well. My email did go to my spam folder but I check it everyday. My best suggestionis just keep all your info updated.

    • Betty McEnaney says:

      Same here. I was so hopeful that I could help out, and then n-o-t-h-i-n-g. A followup letter would give the potential donors some closure…we have high hopes, too.

    • Barbara Pauley says:

      The same thing happened to me in May. I was told I was a potential match, I completed the questionnaire and emailed it the same day, and never heard a word back. Just a simple email or phone call saying “Thank you but you were not chosen” would have been nice.

      • Sabrina Grand says:

        I was contacted, asked to do follow up blood work and told I was a match for a six year old girl. I was mentally prepared to go through the procedure, then nothing….Never heard anything again. A year later, I was called and told I was a potential match…never heard anything again. It makes me wonder. I agree, a follow up letter would be nice.

      • Joanne Stanley says:

        Same here. I don’t know if I would take it as seriously if there ever is a next time.

        • admin says:

          THANK YOU to all of you for your feedback. Please see our response below at http://www.bethematchblog.org/2011/08/have-you-been-part-of-a-preliminary-search/#comment-2056

          Be The Match

  5. chris says:

    I have been on the registry list for at least 10 years and have never been contacted. This makes me wonder that if I have not been contacted or considered as a donor for someone, does this mean that it would be hard to find a donor for me if I needed one?

    • admin says:

      Hi Chris,
      It is not uncommon to be called as a match after 10 or more years on the registry — we can’t predict when or if it will happen. It’s possible that you have an uncommon tissue type, and might have a hard time finding a donor for yourself, if ever needed. It’s also possible that you have not been called because you have a more common tissue type, so that a patient’s doctor has many possible donors to choose from.
      Thank you for being a long-time registry member,
      Be The Match

  6. Jeff says:

    I have been contacted 2x. The first time, I was a match and did donate.

    The second time, i received a phone call. Unfortunately, it went to my cell phone, which I rarely use anymore – so I was delayed in responding by a couple of days. If i had received an email, my response would have been sooner.

    In the second instance, it was determined that i was indeed a match, but the patient was no longer eligible for the procedure.

  7. Linda Moorman says:

    Chris makes an excellent point. If not contacted for a significant period of time, how worried should I be about finding a donor if I need one? It would be a weird cosmic joke wouldn’t it?

  8. wlnelson says:

    Im a type o+ I probable will be the last one needed, They are the most common types

    wlnelson

  9. Cziese says:

    Blood type is not a factor in donating Bone Marrow. You and the recipient does not have to match blood type.

  10. Wendy says:

    I’ve been on the register for several years now and have never been contacted but continue to hope some day I will. Who wouldn’t want to possibly help save a life. I had a son who needed a transplant and ended up having a bone marrow and 2 stem cell transplants and thought then and still today think what a precious gift to give.

    Hope to one day hear from the register.

  11. Diane says:

    I can think of no greater gift than to help someone with a gift of my bone marrow. I lost a loved one to leukemia, and no match was found. In his loving memory, I would be honored to help another.

  12. chris says:

    I just completed the survey about my interest in remaining on the donor list and my commitment to being a donor. I think there were some interesting questions and they did make me think about my commitment a little. As I said earlier, I have been on the registry for at least 10 years and never called. It’s easy for me to say I am committed, but if the call does come, will I follow through? I want to believe that I will be able to handle a little discomfort and give of my time to possibly save another person. I guess that’s why most of us stay on the list.

  13. Tina says:

    I have been registered over 10 years. I have NEVER been contacted. Ever. Isn’t that odd?

    • Barbara Pauley says:

      It’s not unusual to be on the list for 10 years and not contacted. I signed up in 1995 and was contacted for the first time in April of this year – 16 years later.

      • Cynthia P says:

        This is encouraging news, Barbara. I signed up around 1994-95 as well, and I would love to help save another person’s life. Waiting patiently to be called!

  14. Tammy says:

    I also completed the survey — and I am still 100 committed to donating if called. I have been in the Registry since 1989 — and never been called. I will be aging out in a few years.

  15. Debra Barbour says:

    I have never been contacted and I have been on the registry about 15-20 years. Do I ever have to come back in and have blood drawn again and update my status?

    • admin says:

      Hi Debra,
      Your information remains on file, and we will contact you if there is ever a need to have another sample tested. It is important to keep your contact information up to date, though. (The form is here, if needed: https://secure.marrow.org/CONTACT/ADDRESS/update_your_address.aspx )

      Thank you so much for your longtime commitment as a registry member!
      Be The Match

  16. Mark M. says:

    I have been contacted just once in over 10 years. If there is such a great need, you would think there would have been more requests. But I’m ready and willing if there is ever a match.

  17. Jim M. says:

    I have been on the list for maybe 10 years and also never contacted. Sometimes I wonder if I missed something along the way but the upside to not being called is that a person is not sick and their family has not needed me yet and that can be a good thing right? 🙂 I have a co worker who had a marrow transplant last in the last year and is doing well so far. That makes me all the more committed to donating. I have been giving blood since I was a senior in high school (now 43) and an organ donor as well. I would like to see more people join the registry as well as the other things.

  18. Joe G says:

    I have been on the registry for about 15 years now and have never been contacted.
    I hope I can donate before I age out in 5 years.

  19. Rhonda D. says:

    What a blessing it must be to get that phone call you may be a match.
    I hope I get the privilege to donate someday.
    I too have been on the registry for 15 plus years but I have to believe that special someone has not needed my marrow yet. Like Jim M. I have been donating blood for over 34 years and up to 22 gallons, and I know I’m helping people that was but what a honor being able to donate marrow. Thanks to everyone who cares enough to sign up.

    • Anna says:

      Hey…

      I was a recipient of a BMT from an unrelated donor.

      The only way they were able to even keep me alive long enough to find me a donor is through those little pints of blood that people give on their lunch hours.

      Thank you for saving my life, or most certainly lives like mine.

      A.

  20. Joanne says:

    Thank you so much for the specific information what it means to be a potential match now under the preliminary search.

    I was a donor is 04 (on list since 95) and was called again as a prelim match this year. After reading everything I could I was still confused about if after answering all the questions and confirming my committment my info went right to the doctor as a willing donor. I know realize that not yet, the doctor still has to make the formal request and then they will get my data (if they want it).

    I agree it would be nice, if there was some sort of follow-up to the prelim matches on the outcome. We sit on pins and needles for the three weeks waiting, and then for most of us, nothing. Even though it is what is best for the patient, it is emotional for us too and we want to help.

    For those of you who haven’t gotten the call, I hope you do someday, it is a truly amazing and humbling experience. As for pain, at least for PBSC, very little and I would do it again in a heartbeat (plus I hate needles-I just diverted my eyes).

    • alyssa says:

      I became a member of the bone marrow registry only a few months ago in an effort to find a match for a friend of mine who has ALL. Although I am not a match for him (he has yet to find one), I was contacted recently as a match for someone else. They told me I might not hear back for EIGHT weeks! I hope I am able to donate, but if they find someone who is a better match that is something I would definitely appreciate knowing.

      • admin says:

        Joanne and Alyssa,
        Thank you for your comments. We have responded to some of the comments we’ve seen from you and others below: http://www.bethematchblog.org/2011/08/have-you-been-part-of-a-preliminary-search/#comment-2056

        Thanks much,
        Be The Match

  21. lisa says:

    I have been on the registry since I think 1996 was sent a letter couple of months ago as preliminary match but I haven’t heard anything else. I also wish we could get some kind of update like you won’t be needed or your still needed instead of leaving us up in the air wonderring if we need to suddenly plan for this soon. I understand this is for the convenience of the resipient but I think the donor should also have some kind of update also to releve our tension also.

  22. Mitzi says:

    There was a message on my machine from Be A Match saying they wanted to ask me a few quetions about why I was willing to donate. I couldn’t catch the guy’s name, but they said they’d call back in a few days and left me a number to call. I googled the number and it a lady said this paticular guy kept calling and said he would keep calling until her daughter would donate for his daughter. Now I’m a little paranoid to call back. Any idea what this is about?

    • admin says:

      Hi Mitzi – Every month we survey randomly selected registry members 6-8 weeks after they join the Be The Match Registry to ask them about their registration experience, and confirm that they understand their commitment. This helps us improve our donor education materials and programs.
      I am guessing your message was regarding this survey.
      If you have any other concerns, please give us a call: 1-800-627-7692
      Thank you for being a registry member!
      Stacy

  23. Shirley says:

    I have been on the registry for 20 years now and 1 1/2 yrs ago, was contacted by mail as a potential match for someone. I was thrilled and immediately called the contact person to pursue further testing. After sending in the cheek swab, it showed that there were too many differences in my HLA type and that I wouldn’t be able to continue on testing for this particular person. Needless to say, I was devastated, but AM hopeful that one day I will still be able to “Be The Match” and be a lifesaver for someone! Keep hopeful, friends!

  24. Randy says:

    I too just completed my survey. I am more committed then ever and can’t wait to get that call or email. What a great gift to give some one. I tell everyone I know I’m a donor and encourge them to join as well. It’s sad that so many people look at me say “no way would I do that”!
    I only hope they never need some one to help them. Anyway, I’m in for the long haul!

  25. Linda says:

    I hope I can help someone else some day. My daughter has had Hodgkin’s and received a bone marrow transplant from her sister who was a perfect match. It’s a no-brainer for me. If someone needs my bone marrow, I’m there.

  26. Bruce says:

    I have been on the registry for more than 10 maybe 15 years now and have never been contacted for donation. I lost my first wife to Leukemia in 1996. I wish that she had had the option to have a bone marrow transplant. It would be a great honor to be a donator to help save someones life.

  27. Yvonne Kenagy says:

    I also just received my Level of Commitment Survey. 8 days ago I was able to my donate marrow to a man with AML. I would do it again in a heartbeat. The pain and discomfort was minimal. The doctors and hospital staff were fantastic, and I hope that I am graced with another opportunity to save a life.

  28. Denise says:

    About 20 years ago I was contacted as a preliminary match. They sent me to a hospital for an addition blood draw so they could do further type testing. Unfortunately I did not fully match so could not donate. But now that I am fully typed, if I am called as a match there is a really good chance that I will have the chance to do so. I hope to have the opportunity someday.

    • Patricia Rueda says:

      Denise, I too went through the TOTAL matching process, and came up as a match — unfortunately, the patient was not “ready” for a transplant at that time, and it never happened. But, like you, I have the comfort of knowing that my FULL testing results are available, giving both you and I an even better chance to donate and help someone else in the future! God Bless You! Tricia

  29. Joe.D says:

    I, too, have been on the registry for over ten years. I believe it’s not a question of “if” rather a question of “when” if you’re on the registry. My commitment remains the same, because what caused me to be on the registry in the first place remains the same as when I originally signed up: this dreaded disease can sneak up on you and take away everything that you’ve ever known, and it doesn’t age discriminate. I hope to be on the registry list until I am no longer needed.

  30. Kathy Lowry says:

    I too have been on the list for over 15 yrs and have never been contacted…

  31. chris says:

    Reading all the responses has made me more sure that I am dedicated to being a donor if called. I am proud that there are so many people out there willing to do the same.

  32. Patricia Rueda says:

    I was contacted about 8 or so years ago, and went through 4 more blood testing stages, to find out (very happily!) that I was a “perfect match” for a patient. Soon afterward, I received a phone call that the patient was “not yet ready” for a marrow transplant. I don’t know if that means he/she was too ill to withstand the transplant, or what it meant, but I was very disappointed that, in the end, I was not able to help this (or any other) patient at the time. I am coming to the age where I will no longer be considered and “appropriate” donor, and I still pray that I match SOMEONE, and will be able to help save/improve someone’s life/quality of life. All of you “youngins” out there, SIGN UP NOW TO BE A DONOR, AND KEEP YOUR CONTACT INFO UP TO DATE. It could be one of US in the same situation some day! Sincerely, Tricia Rueda

  33. Whitney says:

    I was contacted about 10 months ago. I was so excited to be able to help I started crying on the phone. However, I never received another call, I don’t know what happened, but I hope that person found an even better match!

  34. Lorie says:

    I recently joined the registery during an on-campus event. I had thought about doing so for a while, and I was glad to see Be The Match on campus. I’m in college for the second time, re-training for a new career, and I’m near 40 – not the typical college age person. I do believe it would be an honor to be a match for someone, but I am also the kind of person who worries about details, like knowing how the whole process works in advance. I expect each experience is different, but I want to thank those of you who have donated and have shared a bit about your donation experience. I’m glad to read that it went well, and that you would do it again if need be.

  35. Ralph says:

    God Bless you all!

  36. david says:

    We were contact stating my wife was a match last year, when we contacted city of hope, it wasn’t a pleasant experience and very rude attitude was so angry at City of Hope they should realize it’s about the patients and not there employees have the weekend off they don’t offer weekend appointments for donors WHAT!!!, we couldn’t get there during weekday hours(they only have) no evening or weekends appointments for donors such a shame, My wife owns her own daycare very difficult to close during the week no back up and we don’t get paid but she wanted to help! So we made arrangements to close for a day or two because she wanted to help save a life,,, sent an e-mail for appointment never heard back 2 weeks later was told Dr and patient are trying other treatment and will be notified if the marrow was needed.. which is awesome!!!

    We know firsthand about cancer/leukemia it sucks my father passed last year. So this is very close to us… Just was disappointed on how we were treated by City of Hope.. SAD if you ask me,,,

  37. Duane says:

    After joining the Be the Match Registery (Feb. 2008), I was contacted about 18 months later about being a possible match for someone from another Country…After going through some blood work it was determined that I was a match for this lady, but she was not in need of the transplant at this time…1 week later I was notified by phone call that her Doctor had determined that she was ready and had choosen me to be her best chance for a successful transplant…about 10 days before my donation date I was notified that her leukemia had returned and my donation would be postponed and that if she was able to get into remisson, I would be contacted for a new donation date…Thankfully 6 weeks later I would go on to donate PBSC…Because she is from another Country, I have had no contact and do not know what the outcome of my gift was…I hope and pray that she is alive and well and that maybe someday I will meet her…and Hope and Pray that someone is out there who would be willing same for me or my family if there is ever a need…I would donate again in a heartbeat no questions asked…From the time I was first contacted until the actual PBSC Donation is was about 7 months…Stay Committed…it is without a doubt the most rewarding feeling that you can get.

  38. Rebecca says:

    I worked as a clinical pharmacist on a hematology/oncology/stem cell transplant ward in a hospital. I saw bone marrow transplants happen on a daily basis. It is also my hope that I can be called to save someone’s life.

  39. Suzanne P. says:

    I have been “The Match” and donated my bone marrow to my recipient in 2003. My recipient lived in another country, so I have never met or been contacted by him. I would donate again in a second, without any hesitation. My experience with the City of Hope from the initial contact of being a possible match.. all the way through the day of my marrow donation, was an absolutely remarkable and positive experience. I have spoken to potential donors on behalf of City of Hope, when requested, regarding the donor experience. Being a bone marrow donor is one of the reasons I believe I am here.. to have the opportunity to save the life of another human being has been one of the great blessings of my life and a privilege. Yearly on my anniversary date, I contact my City of Hope coordinator.. Lori, who was amazing to me during the entire process. For me, when offered the chance to save another life, there was absolutely no question in my mind.. but to say YES!! I am proud that I could “Be the Match” and be a part of the tremendous work of the City of Hope.

  40. Diane H. says:

    I have been on the registry for 10+ years. I was contacted once, a few months after I first registered. I was not a TOTAL match. I have not been contacted since. I make sure to keep my contact information updated, just in case I am ever needed.

  41. Nancy L. says:

    I became a registry member in 1997, and was contacted for the first time last year (2010), so not being contacted for a long time doesn’t mean you never will be.

    I responded right away and never heard back, and agree that even a short email saying that you weren’t needed would be nice.

    I was happy to be contacted and hope I will be able to donate before I age out (or develop a health condition that prevents me from donating).

    • admin says:

      Nancy,
      Thank you so much for your comment and for your commitment. Please see our response to some of the comments we’ve received below at http://www.bethematchblog.org/2011/08/have-you-been-part-of-a-preliminary-search/#comment-2056
      Thank you,
      Be The Match

  42. Martina says:

    I am very surprised the way lovely people who wanted to donate, did not get any reply, after they were “maybe” not the right match.
    Even if the person lives abroad why can there be no contact?
    If I would be saved by someone, at least I would like to know the person and send a thank you letter.
    I am very curious about this way of working and why? On the invitation folder I saw people happy to meet their donor and visa/verse.
    Can some admin give me an answer, please.

    • admin says:

      Hi Martina,
      U.S. law and our federal contract require us to have a system to keep donor and patient information confidential for at least the first year after transplant. After that time, if both the donor and recipient sign consent forms agreeing to share their contact information, they can meet. Some donors and recipients are eager to make contact, but others choose not to, for a variety of personal reasons. In addition, some centers do not allow donors and recipients to have contact at any time. For a little more information, see: http://www.marrow.org/DONOR/After_You_Donate/index.html
      Thanks,
      Be The Match

  43. Ruth Collis says:

    I have been on the list for years. I have been contacted twice. The first time I was contacted and told that someone else was a better match for the individual. The second time I went through donating the blood to be tested but never heard back. I tried to contact the center, but still never got a response.

  44. Liz Phillips says:

    I have been on the registry for years and never been contacted. I pray that someday I will be and can help another person.

  45. Paula says:

    I have been on the list probably 15-20 years and not contacted, but concerned about the comment about “aging out”. At what age am not longer “viable” to donate?

  46. Lisa says:

    I’m do not always check my email everyday. If I am a potential match I would hope to be contacted by telephone in addition to email

  47. admin says:

    Thank you for your comments and for offering insightful feedback to help us improve our service to potential donors.

    As a little more background, there are currently two scenarios in which we contact potential donors:

    1) Donors who a patient’s doctor has requested for additional testing. If a donor requested for additional testing is not selected to proceed to donation, they will receive a letter telling them so within 60 days of the initial request.

    2) Donors identified as a potential match in the preliminary search process — as described in this article. Though we do let donors know they may or may not be asked to proceed to the next step, there is currently no written follow-up sent to let them know they will not be asked to proceed. This is complicated by the wide variation in when a patient’s doctor may request donors for further testing. In some cases, a patient’s doctor requests donors the same day and in some cases donors are requested more than 200 days after the preliminary search request. The typical experience for donors is to be requested 20 days following the preliminary donor search contact. But in some cases, patients choose not to proceed with transplant at all.

    We are listening to the feedback you’re giving us here. We will institute a process to provide a follow-up communication explaining the possible next steps to donors identified in preliminary search.

    Thank you to Be The Match Registry members for your commitment.
    Be The Match

  48. Yvonne Perkins says:

    Thank you for the update. I too have been on the list for a long time. I make sure to update my information if there is any changes in hopes I will be contacted.
    Although I have never been called, I keep hoping one day to be able to donate.

  49. Tom Braceland says:

    I have not been contacted, but I will always be available to save someone’s son, daughter, brother or sister. My brother at age 17 needed a bone marrow transplant for leukemia in the pioneer days of this procedure in 1974. He was under the care of Dr Donnall Thomas in Seattle who won the Nobel prize in 1990 for his research in bone marrow transplants. My other brother was the donor. Dave survived for another 3 years wonderful years. Dave was a pioneer in research that paved the way for the current very successful procedures available today. The BBC did a documentary on this procedure called “Dave’s Going Home” way back in 74.
    So please sign up and be willing to give the gift on life.

  50. Alice McCauley says:

    I signed up on 9/11/01 while waiting to donate blood. For several years I considered the greatest gift I could give would be to donate bone marrow. The wording of my this greatest gift has changed since a relative required bone marrow and no suitable match was found. I will be every so grateful if no one is ever in need of a donation of my bone marrow. However, if the call does come, I’m out the door immediately! On another note: the questionionaire asked if one is signed up to be an organ donor. A most valuable followup question is whether or not one’s family will honor this request. I am sorry to respond that my preference is to be a donor yet I am certain my husband will not honor this request.

  51. Marie P says:

    I have been on the registry since 1994 and have never been contacted. We have moved several times (military), and I am concerned I may have been dropped? How can I be sure?

  52. admin says:

    Hi Marie,
    You can make sure we have your current contact info by entering it into our address update form here: https://secure.marrow.org/CONTACT/ADDRESS/update_your_address.aspx

    Thank you so much for being a registry member!
    Be The Match

  53. Glenda Butterfly says:

    I was contacted and told I was a 6 point out of 6 points match for a 7 year old boy with Leukemia. Did the health questionaire, was sent in for bloodwork and was told it would be 2-12 weeks before a decision would be made. WOW, what a long wait for an ill child to endure only to find out there was a match 3 months ago! I’m still waiting to find out if I am able to help this child. My prayers are with him and his family.

  54. Theresa says:

    I’ve been on the registry since 1988, when my son needed a bone marrow transplant. Since we didn’t find a matched donor, I donated as a 3/6 antigen match. It was successful. A few years later, I was contacted as a preliminary match for someone, but since I had already donated, I was told that I would only be contacted again if someone else wasn’t found. Despite the pain of the procedure, I would donate again in a heartbeat to allow someone the gift of life.

  55. Brenda Sanchez says:

    Hi my son needs urgently a bone marrow transplant. Be The Match found 12 perfect matches but still waiting. I deeply hope, whoever is the person really is still willing to donate. My son is having the transplanr at St Jude and Im so nervous about all this.

  56. Sofortkredit Online Kredite Schufa says:

    Hey! This is my first comment here so I just wanted to give a quick shout out and say I really enjoy reading through your blog posts. Can you recommend any other blogs/websites/forums that cover the same topics? Thank you so much!

  57. Nancy H says:

    Hi, My brother was diagnosed with AML Leukemia 2 1/2 years ago. Donors were contacted, a close match was found and roughly two years ago they completed the stem cell transplant and he has been doing fantastic. My family and I are so thankful everyday for that donor!!!!!

    Coincidentially, I was in the registry for my brother, and I could not have been more thrilled when I was contacted for someone else! I want to pay it forward and be that person that helps another person, like someone did for my brother. I have been sent an email, contacted by phone and contacted by us mail. I was told that if I did not hear from them within the next two months then I can assume a better match has been found. Of course, just like all of you I want to hear something concrete, but I can’t stop thinking that if I don’t hear back from them, they are using their time more wisely to help someone else. Please don’t be upset with the process, we all want to be the one to help someone else, let’s just try to be patient and don’t expect too much, maybe they had to move on to save another life, that’s all.

  58. Jeannette says:

    I received a letter today telling me that I have an “uncommon HLA”; I did what the letter asked and got on line and “recommited”. I’m anxious to know how many people have gotten this letter before they were contacted as a match, and also if it might happen quickly now. Once a match when you go to do the donation, how much time off work etc. Of course I would help save someone’s life, if I could. I signed up many years ago, like 1997 when I assisted my friend who was having a bone marrow drive for her aunt. Thanks for any information.

    • admin says:

      Hi Jeannette- great questions! I think the information on this page from our website will be really helpful. Thanks! http://marrow.org/Registry_Members/A_Possible_Match/When_You_re_Contacted_as_a_Possible_Match.aspx

  59. Victoria V says:

    My son is in The US NAVY and became part the registry through the service. I received a call from someone claiming to be from the United States DOD (Department of Defense) looking for my son as a potential match.
    He is the thing: He is still active duty & none of his contact info his contact info has changed so why are they calling me to reach him?
    I am asking if this contact could be legitimate or a deceitful attempt to get personal information about him using this as their cover story.
    I am NOT questioning the integrity if BeTheMatch. I am asking if the contact is real. The woman was very vague and I aksed my son if he has had anyone contact him directly, he said no.

    • admin says:

      Hi Victoria- Thank you for your reaching out, and thank you to your son for his service! Please give us a call at 1-800-MARROW-3 or contact the C.W. Bill Young/Department of Defense Marrow Program: https://www.salutetolife.org/contactus.html so we can confirm this outreach. Thank you again!

  60. kayla says:

    I was contacted with a survey by phone. Does this mean I am a possible match or is that just a routine Thing for them to do?

  61. Vivian Ko says:

    I received the letter said that I appeared as a possible marrow match for a patient. I am still interested in donating marrow. Contact me if you need me. Contact info is still the same.

    • admin says:

      Hi Vivian, Please contact us at 1-800-MARROW2 right away to confirm that you received this letter and to get next steps.
      Thank you, Be The Match

  62. Tess says:

    Ive been on the list for 20 years. 39 year old. Never been contacted as a match.

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  64. Kristy says:

    Does the registry ever call to confirm registration details? I registered two years ago and just recently I’ve gotten two calls asking to verify my information. The person knows my name, where and when I registered…

  65. Vanessa says:

    I am very skeptical of the reach out contacts I have been receiving regarding being a possible match. I signed up in 2001 after 9/11 I believe. I vaguely remember doing this because I was young and feeling patriotic and this was my ‘duty’. This was 17 year ago, and I have moved multiple times. In the past two months, I have been contacted at an email address that didn’t even exist 17 years ago – I found the letter in the spam folder the day before it was automatically deleted, went back the next day and it was gone, my former mother in law’s house, with my name wrong in the letter to her to contact them – and she has moved at least 5 times in the past 17 years and this letter came Fed Ex Express overnight mail to her current address she had only been at for two months. I wasn’t even married to her son at the time I signed up, and his last name isn’t the same as hers. Now I see they’re trying to contact me via Facebook. I’m beginning to feel this is a little bit too much stemming out to reach me, and I honestly am afraid to contact them back because how ‘hard’ they are trying to reach me as a ‘potential donor’. I can understand the responsibility I signed up for and the power I have to help save someone, I’m just saying their contact methods have me very skeptical on how they have been able to find my information and reach out to me…

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