Thanks again to the community at Hope Midtown for volunteering their time, space and resources in hosting the first ever Cheekswab bone marrow drive in NYC this past Sunday. Running a drive in NYC definitely presents challenges over running a drive in VA (including taking supplies to/from the drive location in a suitcase via cab) and due to the three year period since my last drive I had a few anxieties going into Sunday but it went as smoothly as I could have possibly hoped. Personally I felt like the drive validated all of the effort that’s been put into relaunching Cheekswab. It really seemed like people on Sunday understood and accepted the weight of the commitment of joining the registry.
And a huge, huge thank you to the friends and family who took time out of their Sunday to volunteer and man stations at the drive, as well as receive training earlier in the week. Running drives is still an art that I’m nowhere near perfecting but things go so much more smoothly with the help of patient and willing volunteers. None of this is possible without you.
I’m now looking for additional opportunities to run drives addressing ethnic minority groups in NYC. Please contact me if there’s a group or organization you’re involved with that would be interested!
When I started Cheekswab in 2012 I had no idea what to expect. I chronicled that process wholly on this blog — from literally the first day I started realistically thinking about the idea in May 2011 to my recap 2012 retrospective in January 2013, which chronicled 18 months of organizing, coordinating, speaking, blogging and actively pursuing Cheekswab outside of my job. 2012 was an amazing year in a lot of ways. Not only did we register way more in person donors at drives than I ever expected (463) but the website became a valuable resource for those across the world looking for more information. More than 10,000 independent visitors visited cheekswab.org in 2012.
While I never planned to stop being active with Cheekswab, after 2012 I decided to focus on things in my personal life, including my career. Cheekswab.org remained on the internet and I actively responded to some emails and drive publicity requests but outside of an occasional blog post I no longer coordinated drives or speaking engagements. While my time was spent on other things (changing jobs, moving cities, getting married) bone marrow donation remained close to my heart. I knew once I was ready I would once again revisit Cheekswab.
Cheekswab in 2016: NYC
Now settled NYC residents, my wife Eunice and I have talked for years about finding a way to explore restarting Cheekswab in New York City. One of my main New Year’s resolutions for 2015 was to develop a mental model of how to do exactly that. By October the pieces began moving and I started once again reaching out to national organizations and revamping the website. The past several months have been a blur of coding, fact-checking, and making connections, but I’m happy to announce the official relaunch of Cheekswab in New York.
I have to give shout outs to several people who have been more than instrumental in getting Cheekswab off the ground:
Ron Jacob, Medical Director of SAMAR (South Asian Marrow Association of Recruiters). Ron’s organization serves as an official liaison for Be The Match. The impact of SAMAR’s work, not only in the greater New York area but nationwide, on the registration of South Asian donors is an incredible vision to aspire to for Cheekswab. Ron has answered every question, provided me with drive materials, and been an incredible friend throughout this entire process;
Drew Hyun and our entire community at Hope Midtown, who has encouraged us every step of the way and was willing to use their space and resources to host our first official bone marrow drive of 2016 on Sunday, March 6 2016 at Turtle Bay Music School (244 E 52nd St, New York, NY 10022) from 11am-2pm;
EDIT [3/1/2016]: Due to a last minute venue emergency this bone marrow drive date has been postponed, likely until the following Sunday on 3/13. We’ll keep you updated!
Steven Chi, a friend and talented graphic artist who has used his talents to help me with graphics for the website;
And finally my wife Eunice, who is my confidence when mine fails and reminds me how much Cheekswab means to me even when I forget.
We are super excited to see where Cheekswab can go in a place like New York, a city that manifests so much energy, diversity and potential. If there’s a student group, workplace or organization that you’re a part of and would like to schedule a bone marrow drive, please don’t hesitate to contact us!
Just a few weeks ago Joon was diagnosed with acute leukemia, and since then has been in hospital undergoing treatment. Her recovery depends on the identification of a donor whose blood stem cells are compatible.
Joon Gremillet-Nguyen is a young French woman of Vietnamese descent, currently a university student in Geneva, Switzerland. She was adopted in Vietnam when she was few weeks old. She turned 18 in July.
In May she was diagnosed with acute lymphoblastic leukemia –Philadelphia Chromosome positive. At the end of her chemotherapy treatment, towards the end of September, she will have to undergo a stem cell transplant.
Since Joon is an adopted Vietnamese child, there are no compatible donors from within her adoptive family. To find a compatible donor for Joon, we must find a donor whose genetic profile is as close as possible to hers.
For this reason, the best chance of finding a match is from within the same ethnic group as Joon. Unfortunately, there are very few Asian (and in particular Vietnamese) potential donors enrolled in the international stem cell donor registry, although sadly, there is a high incidence of Joon’s disease in this community.
And the second problem for us is that Viet Nam is not a participating country of the Bone Marrow Donors Worldwide, which means that the Center in Switzerland coordinating the search cannot tap into the profiles of donors in Viet Nam. Therefore, it is more likely to find a match for Joon among Vietnamese living abroad. For this reason, we are most grateful to organisations like Cheekswab for relaying this call for help.
Nina Polvanich Louie, a young wife and mother of Thai and Chinese descent from California, is in desperate need of a bone marrow donor following her diagnosis of Stage 4 Lymphoma in September of last year. Her time is running short as doctors have determined that the cancer has spread to her brain and she must find a bone marrow match within 5 weeks.
There’s a very strong push in California and throughout the country to find Nina a marrow match, and given the timeline it’s possible to have expedited marrow processing by labeling the kit “VINIYA” in the promo section. Friends and family are putting a call out to unregistered Asian Americans throughout the country to join the registry as soon as possible, whether online or at a local drive.