Tag: Process

First Response

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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.

Step One: Send Emails, Obtain Information

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Note: These process posts will likely be short and blurb-y — more of a means for me to chronicle what I’ve done and need to do than express anything extensive. Someday they could serve as a valuable resource for other people who may be interested in pursuing causes of their own. That’d be cool.

Previous web searches I’ve done have shown that there are a ton of resources available on the web for obtaining information regarding bone marrow donation, including the extremely awesome http://www.marrow.org. Marrow.org is the website of “Be the Match,” which is the National Bone Marrow Registry. What interests me specifically is their “Grow the Registry” page, where people/organizations can request information kits to host bone marrow drives of their own.

Other sites include http://www.swabacheek.org (which despite the resemblance in name, I swear I did not steal), http://www.asianmarrow.org, and the Asian American Donor Program at http://www.aadp.org.

I want to be able to develop contacts at these types of organizations in the hope of answering questions specific to:

  • Data and statistics about bone marrow as a need — incidence, ethnic breakdowns, etc.;
  • The logistics of bone marrow donation, as the host of a drive;
  • The process of bone marrow donation, as a donor;
  • The process of bone marrow donation, as a recipient;
  • The risks associated with bone marrow donation;
  • The costs associated with bone marrow donation for people of Asian descent;
  • Insights or advice;
  • Prospective contacts;
  • Other ideas as they arise.

My ultimate goal is to fully develop http://www.cheekswab.org, which currently lies in the same dormant state it’s been in since I bought it several years ago. An issue I’ve found with a lot of sites that explain an issue as complex as bone marrow donation is that their presentation of information can be a bit unclear. I want to make a site that allows prospective donors, donors, recipients and others to know exactly what they’re getting into. No sugar-coating, no under-emphasis of the nature of the actual bone marrow donation procedures, no glazing over of statistics and data to express a specific perspective. Being a nerd by nature, I love the impartiality and revealing nature of data. I’m confident that the data will stand on its own and that the need for donors will speak for itself. My goal is not to deceive or manipulate anyone into becoming a donor. I want people to develop their own conviction that becoming a donor is right for them.

Fortunately I currently work as a web developer, so I can handle the technical development of the site on my own. Unfortunately I have the aesthetic instincts of a gorilla, so I may need to consult the talents of some friends or pay for a design. But I think that’s a worthwhile expense. Regardless, the key to the site will be content, content, content.

This post was significantly longer than I expected it to be, but I think that’s to be expected with these initial posts as I still continue to hash out this idea. I’ll be posting under various “tags” — “Mission” will explain the motives/philosophy behind cheekswab, whereas “Process” will chronicle the steps I’m taking to get to where I’m going. Future tags will be explained as they appear.

Anyway, the goal for today: send those emails.