National (Bone) Marrow Donor Program - NMDP

From the get-go, I've had people asking me questions about possibly donating blood and bone marrow for Stefan. His fan club told Daniella that at this point in time, it was not necessary to have their own blood "banked" for his use, which is what other A+ types would donate for. So, thank you to all who asked, but it has been, to this point, unnecessary. Not that "at this point" we're now asking for blood donations. Please donate blood, to the American Red Cross, to Lifesource (IL blood donor program), or at whatever blood-drive you usually donate... There's always a need for donated blood, even more so in the aftermath of Katrina.

Now, to the heart of the matter of my post... Bone Marrow. Stefan will, at some time in the future, need a bone marrow transplant, or more specifically, a stem cell transplant. The stem cells are harvested from bone marrow, hence the terms: bone marrow donor (potentially, you) and bone marrow recipient (Stefan). The hospital's program will cross-match full siblings of their patients to look for possible donors. Bruno and Bo went in for their blood draw at the hospital this morning. Any other family members could be cross-matched through the hospital's program - which would match only for a donor for Stefan - at the expense of the donor. The out-of-pocket expense could run in the thousands. That's right... $1000s. BUT... there is an alternative.

Non-siblings, family members, friends and strangers could all be tested to see if they'd be a matching donor for Stefan, by joining the National Marrow Donor Program's Registry. I'm going to present the following information in bullet points, as this should make it easier to read.

• This is a voluntary registration; you can withdraw from the registry at any time, with written notice of cancellation of participation.*
• To join the registry, you do NOT have to undergo any surgical procedures; there is just an ordinary blood draw (just like giving blood).
• The out-of-pocket expense to donate through LifeSource is $65 per donor. (I spoke with a representative with LifeSource, Dee Cooper, who told me this is the cost.)
• Start with a phone interview about your health; then set an appointment to go to your local participating LifeSource Center for a blood draw.
• Your DNA is pulled during testing of your blood. Dr. Olga is looking for a "perfect match" of DNA for Stefan's bone marrow donor.
• You can ask that they note that you are seeking to be a possible donor for Stefan Maca, but they will NOT take you as a volunteer donor if you say you will ONLY donate to Stefan Maca. You have to be willing to be a donor for ANYONE you may match.
• Your name and info are logged into the National Registry. You may not be a match for Stefan, but you may potentially be a match for someone else who's waiting.
• There are millions of people on the NMDP donor registry (over 4 million*), and just as many people (recipients) are waiting to receive a transplant. It's fairly common that a recipient may not ever find a matching donor.
• The odds are very high that you can have your name on the registry and never match anyone on the recipient list...
• But... there is a slim chance that you may be the 1 in 100,000 (or whatever the odds are) that your DNA matches someone else's enough to make you both a good match. In that case - if you match someone other that Stefan - you DO have the right to say "No." Your commitment to the NMDP is to "consider donation for any searching patient who matches your tissue type."*
• The NMDP matches donors to recipients to facilitate 130 transplants a month.*
• To become a volunteer donor, you must be between the ages of 18 and 60, in general good health, and not have any blood diseases/disorders.*
• If in the last 12 months, you have had a 1-blood transfusion, 2-tattoo or 3-ear/skin/body piercing, you are eligible to join to program; however, you will be deferred from donating for 12 months from date of transfusion, tattooing, or piercing.*
• The actual bone marrow donation is a surgical procedure, performed under either local/regional or general anesthesia. More details found on the website listed below.
• Just as with blood donation, pregnant women are not allowed to donate marrow during their pregnancy or for a specified length of time following delivery.
• Also worth mentioning... I would encourage anyone who is "in the family way" to consider donating cord blood to the NMDP when the baby is born. The cost to the donating family is nothing - it is FREE to donate cord blood to the NMDP*. Your donation will be for public use. Private storage and use of cord blood is not a free service. See the NMDP website for more information.
• If you'd like to be a volunteer donor in the Chicagoland area, please call Dee Cooper at 847-803-7857. She is there Tues-Wed-Thurs, 7:30am-6pm.
• If you are unable to reach Dee, please call LifeSource at 1-800-486-0680. (You'll have to press 1 for English, then 7 for the Marrow Donor Program.)
• For more information on LifeSource, visit www.lifesource.org
• For more information on the National Marrow Donor Program, visit www.marrow.org . This site has full explanations of procedures, terms, and FAQs about donating. Facts and figures quoted above which I noted with an asterisk* were taken from this website.

I hope this information helps to answers many of the questions you have. For more information, please visit the sites listed. Let me know if you find other sites that are helpful to you on this topic. I know many of you expressed interest in trying to match to be a marrow donor for Stefan. This is the way to go about finding out if you'd be a match. Good luck to us all.