It’s been a long time since I’ve written here.

While it’s hard for me to remember exactly what’s gone on in the past four months, I’ll sum up the major points as they come to mind:

1. I’ve had more conversations and emails with Juliette Williams from the NMDP, received a background check and completed the online training courses for both Level 1 and Level 2 Volunteers. I am now a Level 2 Volunteer/Ambassador for the National Marrow Donor Program, which means I can coordinate and run drives on my own.
2. So while I can coordinate and run drives on my own, I’ve still yet to see one in person. The training was thorough, but I have a feeling it won’t really compare to the real deal. I need to make it out to a real drive sooner rather than later. I have a lot of questions as to how to scale a drive and optimize it to accomodate a large number of people.
3. The training (an online tutorial) was honestly kind of intimidating. I didn’t know there were so many steps and volunteers needed to coordinate a drive. I was genuinely surprised as to how involved a process it is, from marketing/awareness, processing kits, confidentiality concerns and fundraising.
4. When I take the time to reflect, I feel enormously guilty for not doing more with my time with regards to this initiative. I can generate legitimate-sounding excuses to appease others (work was busy, life was busy, etc.) but they don’t appease myself. If I really wanted it, I’d work harder at it. That’s the bottom line. And I do really want it. I’m not sure what gives.

I don’t know what it is that I’ve been waiting for. I have the time and the resources to move forward. What am I looking for? The seas to part, a burning bush, a vision in a dream? Grandiose has never really been my style. A generic church newsletter, perhaps?

Two weeks ago I was skimming my home church’s e-newsletter and saw the words “Bone Marrow Drive” appear as a header. Here’s the text included in that newsletter:

Continue reading “4 Months Later” →

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.

A snippet from an email from one of the co-founders of Swab A Cheek:

Thank you so much for your email.  And you won’t believe how amazing your timing is.  I was literally speaking to some folks on Friday, who are trying to focus on increasing the number of bone marrow donors for Korean patients.  There is a 13 year old boy named Nico, whose mom is Korean and dad is European mix, and he could not find a match so is having a cord blood transplant.  But we are still searching for him, since he may need a second transplant one day.

…

We are local in DC.  We are the only registry operated by actual transplant recipients.  So, i like to think that means we care on a different level.  We would LOVE to have you partner with us.  We could help you run the drives – we can teach you to run drives, do swabber training over the phone, and we can supply you with swab kits, and help you find volunteers to run the drives.  If you would like to partner with us, you would be able to track your “matches” over time, and could see which ones found matches, etc.

That changed the complexion of my day completely.

Gave the world a small push, and it pushed back.

Wow.