Guidelines for Participation

Posted August 25th, 2011 by Be The Match and filed in News
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We encourage you to participate on this blog by posting comments, questions and feedback. Please keep your posts relevant and respectful to ensure everyone has a positive experience on our blog. Be The Match may, at our sole discretion, remove any comments that we consider inappropriate or offensive, including comments that are harassing, abusive, obscene, or hateful, as well as comments that promote commercial products or illegal activities. Individuals continuing to make such comments will be blocked from participating.

To protect privacy, we may also remove comments that reveal confidential information about transplant patients, marrow or umbilical cord blood donors or Be The Match Registry members.

Please remember that content posted on this page should not be considered medical advice. You should discuss questions or concerns about your health with your medical professional.

29 Responses to “Guidelines for Participation”

  1. Teresa Wichtendahl says:

    I have a concern that I don’t ever remember doing a swab test so that I can be matched up with anyone. I really want to make sure that they truly have all my information as we know people who could use a donor and I would like to help it at all possible. I have tried to rejoin and get a kit, but the site told me I was already a member and that I couldn’t get one. Is there a number where I can call to verify that they indeed have my sample on record?

    • Cathy Miller says:

      I completely agree with Teresa. I don’t know the next step, and time is ticking on my age. I have been ready for years, yet I have not been taken to the next step. People like us want to help, how do we?

  2. Angela says:

    I noticed Fibromyalgia is listed as a dis qualifier. Does anyone know why. If you are not on medication and it does not interfere with daily life? Controlled arthritis is allowed so I am a bit perplexed. Any information on this would be great.
    Thank you.

  3. kirkcaldy plumber says:

    This is a good idea to have a post about Guidelines for Participation.

  4. Fred says:

    I am surprised, that I am still receiving your email, since I can not donate do to age.

    • admin says:

      Hi Fred,
      There are many other ways you can still get involved! Watch for opportunities in our upcoming enewsletters, and you can also visit us at http://www.BeTheMatch.org/getinvolved
      Thanks!

  5. Susan says:

    I have been on the registry for a couple of years. I received notification I was a possible match for a patient. I completed the next step by completing the medical questionnaire. I received a phone call that everything was a go for further steps. I didn’t hear anything for several weeks. Today I received an email stating I was a match for the patient but the patient is not ready for a transplant at this. Does this generally happen if the patient is too ill to participate in a transplant or can it be due to financial reasons? I just want to make sure in my mind the reasons for not being ready and that I am doing everything I can to help the patient.

    • Susan says:

      oops..email stated patient was not ready at this time…

    • admin says:

      Hi Susan, great question! There can be a variety of reason that a patient might not be ready for transplant due to their treatment status, health status, and more! If you have specific questions- you can feel free to reach out to your donor center and they can help. Or please give us a call at 1-800-MARROW2 and we can answer any further questions. Thank you for your commitment!

  6. Susan says:

    oops..email stated patient not ready at this time..I left the word ‘time’ off.

  7. Diane says:

    What kind of organization are you? Since those age 45-60 can only participate BY MAIL and not in person, I suppose you just dispose of the swab and cash the $100 donation! Why not include PROOF of your claim about the age on your site? It would make you a credible organization because you sure sound like a fishy one after reading your requirements!

    • Jacki Lansdowner says:

      Diane,

      I think if you google “be the match” you’ll see they are well respected and doing a great job.

  8. Jenny says:

    Hello, I am a disabled registered nurse, I take many pain and other medications, and also have “Fibromyalgia” but a good friend of mine who is a mail carrier needs a match…will I be able to donate for her or anyone?

    • admin says:

      Hi Jenny,
      You can find our medical guidelines for joining the registry at http://bethematch.org/Join/Medical_Guidelines/Medical_Guidelines_for_Joining_the_Registry.aspx
      If you have more specific questions we are happy to help answer them, please call us at 1-800-MARROW2.

  9. megan says:

    My daughter and son are a part of the sibling connection program through Viacord. My newborn son is not a match for my daughter. We are no longer sure she may need a transplant but would like to know if another son is a match or myself or my husband is. What is the best way to go about this? We do not know what her future brings but want to take more steps to know if an immediate family member could be a solution. We work with Cincinnati Children’s Medical Center. Whether she needs a transplant or not; my husband would like to become members of the registry. Any help you could provide would be great. Please feel free to email me since our situation is different.

  10. Admin says:

    Hi Megan,

    Please contact Patient Services to discuss your question at 1 (888) 999-6743.

    We appreciate your inquiry.

  11. Shauna Brynildson says:

    I was a match for an international recipient. I donated. Due to international restrictions, I am supposedly not able to meet my match. Are there any new avenues available for me at this time? I would love to meet my match. This is on my bucket list. Thank you for my assistance in making this happen.

    Graciously Yours,
    Shauna Brynildson

    • Joanna Craze says:

      Contact your rep (The person who set up the donation process) There is a release form you can sign to let them know you are willing to be contacted by the recipient. It is up to them if they want to contact you. You may not be able to meet them in person but maybe a letter will help!! I was also told that I could write a letter to the recipient and send it to my Rep and they could forward it to the recipient. Due to privacy laws there really can’t be any contact unless both parties agree. I donated almost 2 years ago and am just now writing a letter to my recipient.

  12. Angela Schichter says:

    Hi Joanna,

    I was contacted and told I was a match for a women with cancer. I went yesterday for a blood draw to see if I am a complete match. Do you remember how long after your blood draw that someone contacted you?

    Thank you,
    Angie

  13. marica valdez says:

    Wanted to know are people compensated for these bone marrow donations ?

  14. BECKY TEJRAL says:

    I just saw a story about two sisters traveling thru all 50 states looking for a donor match for the one sister. her sister’s name is Allie, but I don’t know the name of the sister needing a match. Would LOVE For THIS To Get To THEN To KNOW If THey HAVE Been To Nebraska. hoping I could possibly be that donor.

  15. Jessica Risdon says:

    hi, my name is Jessica and I am new to this site. I just found out I have Myelofibrosis a rare bone marrow pre cancer. I have to receive blood transfusions about every 10 days. My hematologist/oncologist said that my only cure is a bone marrow transplant. How can I register and become a member of Bethematch.com?

    • admin says:

      Hi Jessica,

      We are so sorry to hear that you aren’t doing well. Be The Match registry is the national database of potential bone marrow donors, so it is not possible for you to join the registry. However, if your doctor determines a marrow transplant is the best option, he/she will be searching for Be The Match database to look for a donor that matches your similar HLA type.
      To learn more information about the marrow donation process, you can call our patient service coordinators at 1 (888) 999-6743 or email them at patientinfo@nmdp.org. You can also find more information about searching for a donor at: https://bethematch.org/For-Patients-and-Families/Finding-a-donor/FAQs-about-finding-a-donor/.

      Sending our best wishes to you,

      Be The Match

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  20. Jbaamrbreir says:

    My son was diagnosed with Lieukemia when he was 4. Viacord has since been kind enough to store a few of my children’s cord blood and tissue at no cost for our family for a 5 year time period. Soon, we will only have one child’s cord blood available for use if it is needed for any reason. I am now due with another child, and received a response from my oncologist that she will not fill out a form to allow me to bank this baby’s cord blood and tissue because I have “stored enough”. What is your opinion on this response?

  21. Marilyn Brown says:

    Why is the maximum age 62 to donate bone marrow?

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