A quick update —
Response 2 was from A3M (Asians for Miracle Matches), an organization based out of California. Here’s a snippet of that email (the questions I asked are italicized):
2. I’ve heard a rumor that due to the extreme need for Asian donors, the fees associated with registration are waived. I was told from a different source that this was only true when a drive is held for a specific person. What are the typical costs of bone marrow registration, and are these fees waived for Asian registrants?
Typing cost for a donor is about $100 and NMDP covers the cost of all minority donors. If you are a Korean donor, it is free. If you are a quarter Native Indian, if it free. If you are half Hispanic and half Caucasian, it is free. If you are Jewish, not free. African American, it is free. But we have a limited funding for a Caucasian donor as well.
3. Are there any specific resources or contacts that your organization may have that would be particularly beneficial for me to consult before I begin the processes of establishing drives?
There are other donor centers and recruitment groups but we are the only group has Korean speaking staff including me. The Korean speaking donors we register will be contacted by us in Korean when they become a match. This obviously will increase the chance to work with them to get further tested and eventually donate to a patient.
A3M sounds like it will be a great resource, especially when it comes to probably the biggest deficiency I see in my plan right now: my lack of Korean-speaking ability. The answer to #2 was very promising.
Response 3 was a phone call from the National Marrow Donor Program (Be the Match), which is the nationwide organization that basically every other satellite organization affiliates itself with. The coordinator I spoke with (Juliette) was extremely knowledgable/helpful, and was able to answer all of the questions I had very thoroughly. She’s laid out an initial “plan of attack” for me (which is standard for all prospective volunteers), which sounds really great. I get “trained” to run my own drive over the phone via a supplemental training kit they mail to my home. Then, I coordinate with Juliette (one of the east coast drive coordinators) to go witness a few local drives in action myself, just to get a feel for how they’re run. I’m then part of their network of volunteers as a “lead volunteer / ambassador,” at which point I may be asked to assist in various bone marrow drives throughout the area.
Basically, the NMDP trains me and gives me all of the necessary knowledge/supplies to coordinate my own bone marrow registration drives. I couldn’t ask for a better hookup than that.
One of my first questions for Juliette was question #2 I asked in the email snippet above. Unfortunately it turns out the response from A3M is only partially correct. While the NMDP does cover the cost for minority donors, it has a limited amount of funding allocated on a yearly basis to accommodate these registrations, and by May 16, 2011 that fund has already been depleted. While they don’t turn away prospective donors due to a lack of funds, they do set up donations tables at their drives and ask people to possibly cover whatever portion of their registration cost that they can. They also attempt to partner with local businesses or individuals to raise money for drives, since donations to the organization are tax deductible.
I’ll admit that this news is a bit disappointing, but I’m not surprised by it. I was hoping to be able to keep the money issue out of this for a variety of reasons, but looks like that may be impossible now. But that’s okay. Money is a concern now, but it’s by no means insurmountable.