Vicente Wolf Blog

Thanks for posting this, I truly appreciate your empathy and concern. I am in the system however have yet to be called to donate. I am reposting this on my Facebook page.

Best,
Jaime

I posted a link from my blog to your posting.

I didn’t realize it was so easy to test and get registered as a donor.

I don’t know how to format a backtrack… can someone give me information on how to set that up? Thanks.

Oh, what’s also really fun is to share the link directly to his video on Facebook – here’s the address for that:

http://www.youtube.com/watch?v=Qtx00Wa6i1w

Vicente,

Well that was easy! I entered the two addresses you listed for your “Bone Marrow for Christmas” blog and Seun’s youtube video and they appeared as links on my Facebook pages along with a cover letter I wrote to introduce the subject. I also made sure it was open to “everyone” not just “friends” or “friends of friends” for maximum exposure. For family and friends that I’m not connected to on Facebook, I sent an e-mail version.

My wife Helen, who is on the Board of the Epworth Children’s Home and has a better connection to the charity community than I, will pass the word along and suggested we all visit the website of the Bone Marrow Donor Program, also named “Be The Match” Registry, for additional information including eligibility of donors with regard to age (18-60) and allowable health conditions (see their list). For anyone disqualified for those reasons, we encourage the other forms of participation they recommend.

Sadly they confirm what you stated about the 17% chance of Seun finding a donor, because race and ethnicity are absolutely prime factors in compatibility of victims of this disease and donors. These odds are only slightly better than drawing two cards to an inside straight, but here’s a long shot. Helen and I live in University City MO, a lovely historic inner-ring suburb of St Louis that is roughly 50% African-American. We have African-American friends and a few contacts still in the school district, so…… And the national design community you address is hardly a racially monolithic group any longer and so…..

I make no promises, but perhaps the Gods will favor what the odds resist.

Gary

Vicente and everyone,

My wife is over the age limit to be a donor and I will be in a few months, plus that doesn’t address Seun’s situation because of our race incompatibility. The Bone Marrow Donor Program makes a special plea for registering donors from all minorities and makes it clear that this is their biggest issue, so I believe that’s the best place for any of us to put our efforts. I see this as a challenge of communication and motivation.

After years on the board of the PTO when our kids were in school, I remember that it was somewhat difficult to get African-American parent participation because mom and dad both worked, sometimes at two jobs, and when it was just mom then for sure she worked two jobs, and there was sometimes still concern of being rolled-over by the system. But once they became involved, they were the most committed. We have a friend who has been a volunteer in the schools all these years, who recently is a breast cancer survivor, so she is very plugged into community and health issues. If anyone knows how I or someone could present this issue to the African-American community in our schools, she would.

I used to be a soloist at a church (folk, old-time southern gospel division) that now has black members, and is a service oriented, outreach organization. That might be a receptive group. So that’s my plan for now and some ideas for you all to build on.

Registry should present no hurdle, though the actual procedure involves the donor taking a medicine for five days prior to the procedure which can cause fatigue or other minor symptoms, a day for the procedure and recovery from anesthesia, and a couple days to a couple weeks of minor soreness, so that needs to be presented. But the good news I note as an example is that two young women at Missouri U (go Tigers!) registered and were tapped to be donors in transplants that turned out to be successful. So this process is the real deal!

There is no way to track registry success, but that shouldn’t stop us. After reading your bio, Vicente, and realizing that you became one of the best interior designers without even a high school degree and overcoming dyslexia, I’m embarrassed at how many times I’ve made excuses for not doing things I wanted to do. It’s just a matter of tilting the odds back in the other direction, eh?

OK, I’ve burned up enough internet space for a couple days!

Gary