Month: January 2012

Janet Liang and the “R” Word

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Join the Registry for Janet Liang Now

Janet Liang

Janet Liang is a UCLA graduate student who was diagnosed with Acute Lymphoblastic Leukemia (ALL) in 2009. I don’t know her personally, but I linked to her website in the Links and Organizations section of this site because I came across it while looking for other bone marrow initiatives. Through helpingjanet.com, Janet has used her diagnosis to reach out to and educate thousands of people about the need for minority donors. In a matter of two years her outreach has helped to register more than 6,800 bone marrow donors. It’s seriously a staggering number. To give a frame of reference, I set the goal for cheekswab at 300 donors this year. I’ve registered 82 so far.

In the last two days I’ve received two separate emails about Janet, as recent developments concerning her health have created an outpouring of support across the Internet. I was directed to this blog post that she wrote on December 26, entitled “I’m Dying. Again.”:

Last week, I was notified by my hematologist/oncologist that I’ve unfortunately relapsed and will need a bone marrow transplant. And tomorrow (December 26) I will be heading back to the hospital for a month of high-dosage chemotherapy.

I’m writing to ask you as my friends and supporters to be a part of my Helping Janet family. Now more than ever will I really need to count on you for your help. After this intense round of relapse chemotherapy, my oncologist wants to move forward with conditioning chemotherapy and a stem cell/marrow transplant, but not without a perfect match. This is crucial for my survival, and I truly appreciate your support during these difficult times.

When I read it, I freezed up immediately. I felt my heart beat faster and my face begin to flush. She had said the single word that I have completely eliminated from my vocabulary for the last 5 years, no matter the context:

“Relapse.”

Continue reading “Janet Liang and the “R” Word” →

UVA GCF Bone Marrow Drive: 79 New Donors!

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On Friday a few friends and I had the pleasure of running a bone marrow drive at Grace Christian Fellowship at the University of Virginia. The response from GCF was overwhelming.

View from the Swabbing Table
View from the Swabbing Table

As the first “official” cheekswab drive, there were a lot of unknowns going into Friday. I was told that a reasonable estimate for attendees was in the ballpark of anywhere from 60-80 people, based on previous events of a similar nature. It’s always a difficult exercise to make any worthwhile estimates about the number of kits needed for a group of x size because the response can be so variable. For example, the first drive I was ever a part of was coordinated through a different bone marrow organization. The drive was scheduled for a church congregation of 100 people, and the drive organizer was told that for a congregation of 100 people, we’d be lucky to get 10 registrations. For whatever reason, more experience seems to set the level of expectation lower rather than higher.

Continue reading “UVA GCF Bone Marrow Drive: 79 New Donors!” →

UVA Bone Marrow Drive, Tomorrow 1/20/2012

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Just a reminder that I’ll be speaking briefly/running a bone marrow drive at Grace Christian Fellowship at UVA tomorrow, starting at 7:00pm in the Student Activities Building.

Event details can be found here: UVA Grace Christian Fellowship Bone Marrow Drive

For any GCFers that may be reading this page, I’ve requested that some brief introductory information be included in the Facebook invite. Remember, to help facilitate filling out the forms, the best way to make sure you have the information is to send yourself an email beforehand (if you have a smartphone). Otherwise, you can write info down on a sheet of paper and bring it with you.

I look forward to seeing you all tomorrow!

Promoting the cause

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So I just put the first public promotion of cheekswab on Facebook, and the response from friends has been overwhelming. To all of those who have re-shared, linked, re-tweeted and redirected others to this site, I thank you. Spreading awareness about the issue is the first step in changing lives.

There are those people out there, especially in the social media landscape, that are fantastic at self-promotion. Youtube channels, Facebook pages, twitter replies, etc. Unfortunately, given my personality type, I am decidedly not one of those people. But I do see the value in social media, and I think there’s a delicate balance between using social media in an unobtrusive yet informative/engaging manner and the world of twitter-bots and Farmville updates. It’ll be a work in progress, but I look forward to figuring out how to use social media in the most effective manner possible. Please let me know if cheekswab ever gets to the point where it begins to disrupt that balance.

For those of you coming to this site for the first time, I encourage you to do something along the lines of the following:

  • Read the site content. I’m not interested in fooling anybody into joining anything. The commitment required to be a donor is too serious to be accepted under false pretenses. As a prospective donor you have the right to be objectively and honestly informed, and anything to the contrary will ultimately serve to undercut the need for more donors rather than substantiate it.
  • Order a swab kit online. If you’re not local to VA/DC/MD and don’t know of an upcoming drive in your area, the fastest way to join the registry is to order a swab kit directly from the National Marrow Donor Program.
  • Consider a financial donation to the NMDP. It costs $100 to register a single person into the bone marrow registry. If you have the means, please consider making a financial donation to help offset some of these costs.
  • Host a drive. For VA/MD/DC residents, please consider hosting a drive. I would love to help schedule one with you. I welcome minorities of all ethnicities, but I’d especially welcome the opportunity to engage with any non-East Asian communities. To be honest, I don’t have many ties to other minority groups and would love to develop some.
  • Spread the word. Please share this site address in whatever capacity makes you comfortable. Awareness is the first step to real, effectual change.

Thanks again for visiting. Please use the contact page to get in touch with me for any reason.

Dan

cheekswab.org Goes Live!

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5 months later, the website is ready to go live.

It’s been a long road, with probably upwards of 100 hours of writing content and making design choices. But I’m pleased with how everything turned out, and I think it could serve as a really valuable resource to anyone who wants to learn more about becoming a bone marrow donor.

Brief acknowledgements:

  • Elly Kim, the fantastically talented and patient designer of the logo at the top of the page;
  • The number of close friends and family that gave me advice, encouragement, and helped proofread the content of this site;
  • The National Marrow Donor Program, for providing such an incredible, live-saving public service and a wealth of information on their website;
  • Anyone who has joined or considered joining but wanted to learn more about the bone marrow registry;
  • Those patients needing a bone marrow transplant and their loved ones.

Check back for updates, and please share the link to those who many not know about the cause already! We’ll also be on twitter: @cheekswab.