finding donors

[Nancy D]

Turns out there are no current perfect matches. Does anyone know what chances are there of actually getting a perfect match at this point? Statistically I should be in a group likely to find a match being of northern euopean descent, but my only sibling is not a match.

[Neil Cuadra]

Nancy,

I don't know what the statistics are, but you can read more about The Search Process at the National Marrow Donor Program website.

[Tom C]

Originally Posted by Nancy D

Turns out there are no current perfect matches. Does anyone know what chances are there of actually getting a perfect match at this point? Statistically I should be in a group likely to find a match being of northern euopean descent, but my only sibling is not a match.

Hi Nancy,
I have a brother and sister and HLA typing indicated they are not a match. Apparently I have "an uncommon allele" or genetic marker and don't match anyone on the national data base either. I've been trying to spread the word to increase the number of bone marrow donors. Unfortunately, there is a fee for someone who wants to donate, although there are times throughout the year when the fee is waved. Another challenge is getting people to overcome their fear of becoming a donor. I've been told by some that they would be happy to donate their bone marrow to me, but they wouldn't donate to a stranger. WHAT!!!! Some people just don't get it. There are lots of misconceptions about the process. I guess it comes down to numbers. We all need to spread the word and get as many in the database as possible. Most of all, don't give up hope!
Thanks,
Tom
(42 y.o. Dx 8/07 MDS RARS Hematologist wants to start Aranesp-thinking about it)

[Nancy D]

Wow, so I can't just get a bone marrow drive going through my church and community and get donations without it costing? And if individuals want to be tested it costs? Does that apply if they agree to submit to the bank? In getting the word out, where should I refer people?

[Neil Cuadra]

Originally Posted by Nancy D

Wow, so I can't just get a bone marrow drive going through my church and community and get donations without it costing? And if individuals want to be tested it costs? Does that apply if they agree to submit to the bank? In getting the word out, where should I refer people?

There are a few choices:

People age 18-60 in the U.S. (or Puerto Rico) willing to pay $52 for a cheek-swab kit can join the Registry all by themselves. They can order the kit at the National Marrow Donor Program Join Now page. You could give people you know that information and that web address.

You can look through the Donor Center List to identify your closest donor center, contact the center to learn about their procedure for joining the registry, and pass the word along to people you know.

You can use the same Donor Center List or the zip code tool to look for upcoming donor events and help publicize the event. Major events are also listed here.

You can contact a Recruitment Group and find out how they can help you.

You can contact the NMDP directly for more ideas. They are always looking for people willing to organize a drive. Their number is 1-800-MARROW-2 (1-800-627-7692). Their email address is outreach@nmdp.org.

That still leaves the question of who pays for the testing. Sometimes a recruitment drive has a sponsor (e.g., a corporation, civic group, or church) to pay for the testing, so people can join the Registry for free. It's worth keeping your eyes open for sponsored events you can help publicize, or contact any groups that you think might be a sponsor and offer to help organize an event if they sponsor it. Some people ask their own employers about this.

[Nancy D]

thank you!!