I volunteered with the National Marrow Donor Program at TEDxMidAtlantic on Saturday in DC. Getting to the building was an adventure; I had to take in a box of supplies so I had to drive in, and every other road in DC was closed down for a marathon/walk/HORSE SHOW at Verizon Center. It was raining pretty hard too. So I parked in a garage 12 blocks away and walked to the venue, carefully holding my umbrella over the 25 pound box of swab kits since I didn’t want to get those wet. I thought my arms were going to fall off by the time I got there.
TED was really cool, and I anticipate going to one as an audience member soon. The marrow drive was somewhat of a success — we registered 21 donors which is great, but only a fraction of those were minorities. I don’t know if any of them were South Asian, which was the target group we were going for in honor of Amit Gupta.
I was finally able to meet the NMDP Northeast drive coordinator Juliette, and she is both awesome and hilarious. Very generous with her time and energy in pursuing the cause of recruiting donors, in addition to being a wealth of insight into what it takes to logistically run a successful drive. Turns out fundraising is a much, much bigger issue than I originally anticipated. It was awesome working with her and she gave me a lot of great advice about Cheekswab, which she thinks is a fantastic idea.
We ran into a couple of famous folks, which was cool. Reggie Watts was a super nice guy and tweeted our cause. Gbenga Akinnagbe, who was Chris Partlow in the HBO series “The Wire,” registered to be a donor. I consider The Wire as my favorite television series ever, so it was great to meet the guy face to face. Also a super nice guy.
Amit Gupta is a silicon valley/tech entrepreneur who has been in tech news a lot recently because he needs a bone marrow transplant. He was diagnosed with AML, and there’s a very active search for a donor. See his website here: http://amitguptaneedsyou.com/
One of my favorite tech websites/news aggregators, Hacker News, has had news about Amit on-and-off for the last couple weeks. When I opened the most recent post I saw this comment at the top:
The concept of donating bone marrow terrifies me. I imagine a doctor drilling into my skeleton and using a large needle to suck out the gooey stuff that makes my blood. It sounds absolutely horrific.
If I were ever to consider doing this, someone would have to educate me to the point where my perceived safety is high. Right now I know that this probably won’t kill me, but I don’t understand it enough to trust it. I imagine that I am not the only person in this situation.
I also felt terrible writing this. My fear is absolutely petty compared to the fear of being struck down by leukemia. Perhaps that’s why I felt obligated to share.
Continue reading “Amit Gupta”
The fiance of one of my long time friends got the call a few days ago that he was a match to be a bone marrow donor. He registered for the registry around 2004/2005 in California, didn’t hear anything, went to the Peace Corps in Africa until last year, and was contacted in October 2011 in Washington DC that he was match. Six years later, across the country.
He got a blood test recently to confirm the match.
They’re scheduling his donation for November now. They say he needs to do the hip-based donation versus the PBSC donation, which (I think) usually points to the idea that the recipient is younger, like an infant or toddler. The recipient has acute mylogenous leukemia (AML), the same leukemia that I had. The hip-based donation is the less comfortable of the two, but he’s willing to do it anyway, and even postpone a planned vacation to the UK in order to do so. That speaks to the character and empathy of Dennis.
I’ve asked him if I can be there with him throughout the process, and he’s very graciously accepted my request. I want to learn, I want to document, I want to share his story. I know what it’s like to live with cancer, but I don’t know what it’s like to donate bone marrow. I’ve wondered for a while now what I can do to make the donation process real to others, given my inexperience, and Dennis’ story will be that opportunity.
This will be a life-changing opportunity for him. Seriously life-changing.
Sitting in Starbucks on a Friday evening, with Firefox/Firebug, Photoshop, and WordPress to keep me company. WordPress has become so customizable/plug and play/non-developer friendly that it’s almost like learning an entirely new language to get it to do what I want. Shortcodes and WP functions are everywhere. I’m fortunate to have learned PHP for my internship a few years ago and some experience with creating a WP site already, as it’d be an entirely different monster for someone unfamiliar with web development/PHP/jQuery/CSS.
I’m not where I’d like to be in terms of progress on this site, but I guess it’s better late than never. Unless I dedicate time intentionally (like Friday night) to this site, it’s continually slipping through my fingers. After looking at code for 8 hours at work I’m not exactly psyched to come home and look at more code during the week.
Working on a Friday night doesn’t bother me. Starbucks provides the perfect environment for dev work: ambient noise, random things I can stare at aimlessly when I’m thinking through something, something to sip, caffeine, power outlets and wifi. When I think about things I’d otherwise be doing tonight (probably eating something fattening followed by doing something mindless), it’s a worthwhile trade off.
Back to work.
Finding an appropriate design for the website is a lot harder than I thought it’d be. Same with determining and producing the right content. There’s a lot more strategy that goes into the design and structure of a website than you’d think. Attention spans are precious (and fleeting).
I was going to write more about this, but I’ll write a synopsis later when I’m done. If I’ve learned anything so far, it’s that you can sit in a chair and think about things until your head hurts. There’s more to be said about actually putting forth an effort to get the thing done.