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170 in 7: A Bone Marrow Cyberdrive in Memory of Janet Liang

September 21, 2012

On September 5th, 2012, Asian American stem cell and marrow donor registry advocate Janet Liang received her first transplant from a volunteer donor. It was a last ditch effort in her three year battle with acute lymphoblastic leukemia. On September 11th, just a week after the transplant, Janet passed away due to complications from leukemia, before the new stem cells could engraft.

Janet learned that she had cancer while undergoing a series of routine physicals at UCLA during her senior year. The physical exams were to help her prepare to study abroad in Paris. Instead, Janet found herself enduring brutal chemotherapy regimens while she spearheaded an international search to increase the stem cell and marrow donor registry. Told that the odds of finding a match for a Chinese American patient were 1 in 20,000, Janet and her friends set the goal of registering over 20,000 new potential donors to the Be the Match registry. After over three hundred drives, they surpassed the 20,000 registrant goal. Due to these amazing efforts, Janet and an astounding additional 18 patients were able to find their lifesaving matches.

By this point, you’ve realized that unlike the other articles on Racebending.com, this article is not about how people of color are underrepresented in entertainment media. This article is about my friend and fellow UCLA alumna Janet Liang, one of the bravest and most inspirational women that I have ever known. While we have been advocating for increased representation in film, television, comics, and other entertainment mediums, Janet and other patients in need of a stem cell or marrow transplant have been advocating for increased representation in national and international registries. Her efforts touched thousands of people and even brought greater attention to this issue to the White House.

This article is a reminder that Asian Americans and other people of color as a whole are terribly underrepresented–not only in entertainment media, but also in other vital areas of American society–in this case, a life-saving registry that enables people from all around the country the opportunity to save a life.

All it takes to join the registry is a simple cheek swab. It’s so simple, you can even do it from home and pop it in the mail. The odds of being selected and donating are about 1 in 540. The donation process is often so similar to donating blood platelets, that people have participated in Ask Me Anything sessions on Reddit.com while sitting in the hospital room, waiting for their cells to finish downloading into a lifesaving bag for a patient in need.

Many patients who receive transplants are able to survive beyond a transplant for over a decade or more. For Matthew Nguyen, the UCLA alumnus who inspired me to join the Be the Match Registry in 2007, a stem cell donation from donor Diep Dao meant over two additional years of life. For Matthew, those subsequent years were priceless. He was able to go back to school, able to marry the love of his life, meet and befriend his donor, and even able to meet some of his heroes on the Lakers.

When I spoke with Matthew and Janet in 2009 about registering people to the national database, both of them mentioned that one of the biggest barriers to getting more people to register is the misconceptions. Years before he was diagnosed with cancer, Matthew volunteered for Asians for Miracle Marrow Matches (A3M) a nonprofit in Southern California that assists families and patients in need of transplants and encourages more Asian Americans to join the registry. One thing Matthew specifically mentioned was how Hollywood depictions of leukemia and bone marrow have misled people about the advances in technology. He told me that Hollywood depictions of transplants have scared people from even just signing up to be matched. As mentioned earlier, 74% of modern donations and transplants are performed through a procedure that is similar to donating blood platelets, a procedure called peripheral blood stem cell donation (PBSC.) Even the actual bone marrow surgery–which is usually done for sicker patients or for patients who are children–is done while under anesthesia through extracting marrow from the hip bone (not from the spinal cord as most people think!) Scenes like Will Smith’s unrealistic, anesthesia-free transplant in the film Seven Pounds, or that one sensationalist episode of House M.D., have done a great disservice to patients, their families, and our communities by deterring people from volunteering to join the registry.

Most (but not all) donors share the same race and ethnicity as the transplant recipient. Because people of color are underrepresented in national registries, this means that if you are a patient who is white, and you have leukemia–or any of the other medical conditions that necessitate a stem cell or marrow transplant–your odds of finding a donor match are 93%. In contrast, black patients have a 66% chance of finding a match, Latinos have a 72% chance, Asian Americans have a 73% chance, and American Indians have a 82% chance. These are huge disparities. According to the Mavin Foundation, approximately only 25% of those listed in the donor registry of the National Marrow Donor Program (NMDP) are racial “minorities”, and people of mixed race represent only 2% of that.


Above: After a major search, Janet holds the bag of lifesaving stem cells from her anonymous donor.

Earlier this week, a group of Asian American bloggers set out to host 170 in 7: A Bone Marrow Cyberdrive in Memory of Janet Liang. Our goal is simple: To celebrate Janet’s life and her legacy, we want to register 170 new potential bone marrow donors in Janet’s name in just 7 days. And this is how individuals can make a difference: either by registering to join if you are eligible, or, if you are not eligible, advocating to expand who can be eligible for the registry and encouraging friends and family who are eligible to register.

Please read on to learn more, and please consider registering. If you have already registered, don’t forget to update your contact information in case doctors need to reach you to screen you to see if you are the best match for a current patient in need.

170 in 7: A Bone Marrow Cyberdrive in Memory of Janet Liang

About

Leukemia is a type of blood cancer and the most common cancer to affect children and young teens. Treatment to save a leukemia patient’s life often requires a bone marrow transplant from a “perfect match” donor – a donor whose blood matches a recipient’s blood for 10 separate genetic markers.

Unfortunately, Asian American and other non-White leukemia patients are much less likely to find a “perfect match” donor than White leukemia patients. This is because Asian Americans and other minorities are significantly underrepresented in Be The Match, the national bone marrow registry used to search for and match potential bone marrow donors with recipients.

Janet made it her mission to register Asian American bone marrow donors, and thanks in part to her efforts, at least 18 bone marrow matches were made to recipients nationwide. However, last week, Janet passed away without finding a “”perfect” match for herself. Today, many other Asian American leukemia patients are still waiting to find their perfect match, like 2-year-old Jeremy Kong, who was recently diagnosed with leukemia.


Above: A photo of two year old Jeremy Kong from San Francisco, California. In between painful chemo treatments, he dresses up as superheroes. He desperately needs a marrow match. We are still looking for the person to save his life.

To celebrate Janet’s life and her legacy, we want to register 170 new potential bone marrow donors in Janet’s name in just 7 days!

Be one of the 170 in 7:

Janet Liang, a vibrant 25 year old UCLA graduate and a leukemia patient who spent years championing leukemia awareness and Asian American bone marrow registration, passed away last week. In Janet’s memory, this site is partnering with a network of other prominent Asian American sites to host 170 in 7: A Bone Marrow Cyberdrive in Memory of Janet Liang.

About

Leukemia is a type of blood cancer and the most common cancer to affect children and young teens. Treatment to save a leukemia patient’s life often requires a bone marrow transplant from a “perfect match” donor – a donor whose blood matches a recipient’s blood for 10 separate genetic markers.

Unfortunately, Asian American and other non-White leukemia patients are much less likely to find a “perfect match” donor than White leukemia patients. This is because Asian Americans and other minorities are significantly underrepresented in Be The Match, the national bone marrow registry used to search for and match potential bone marrow donors with recipients.

Janet made it her mission to register Asian American bone marrow donors, and thanks in part to her efforts, at least 18 bone marrow matches were made to recipients nationwide. However, last
week, Janet passed away without finding a perfect match for herself. Today, many other Asian American leukemia patients are still waiting to find their perfect match, like 2-year-old Jeremy Kong who was recently diagnosed with leukemia. To celebrate Janet’s life and her legacy, we want to register 170 new potential bone marrow donors in Janet’s name in just 7 days.

Be one of the 170 in 7:

Registration is free for donors, convenient and secure.
Here’s how to be one of the 170 in 7:

Click on the link: http://join.bethematch.org/TeamJanet.
Fill out the forms to request a free, do-it-yourself cheek swab kit.

Tweet about it using #170in7 to be counted!  Click the button to send a Tweet to your followers: Tweet

If you don’t have a Twitter account, send an email to jenn [at] reappropriate [dot] co to be counted!

And that’s it! Less than ten minutes of your time can help you save a life!

Donor FAQ

In about one month, a cheek swab kit will be sent to you in the mail, along with instructions and a pre-paid return envelope. Follow the instructions to swab your cheeks and return the kit. If you are matched (only 1 in 540 registered donors are ever matched), you will then be contacted and asked if you would like to donate your bone marrow.
Registering is not a commitment that you must donate; it is only to help match recipients with potential donors.

Most donors are never matched. But if you are matched and if you do choose to donate your bone marrow, that donation is likely to save a young person’s life.

Other Ways to Help Out: Donate to AADP and/or to the Liang family

Donor registration is free for the donor because AADP and other non-profit organizations cover the costs of donor registration through charitable donations. If you are unable to register as a bone marrow donor, please donate to AADP to help fund registration costs for other donors, or to the Liang family (PayPal account using helpingjanet@gmail.com as the recipient, or checks payable to “Janet Liang” sent to PO box 1526, Pleasanton CA 94566).

Other Ways to Help Out: Spread the Word
If you are already registered, please help spread the word about the 170 in 7 bone marrow cyberdrive through Twitter and Facebook. If you would like to join your site to this partnership or if you would like more information about the 170 in 7 bone marrow cyberdrive, please go here.

Partnership

170 in 7 is a partnership between the following: 8AsiansAARisings, Angry Asian Man, Asia Pacific Arts, Asian American Donor Program (AADP), bigWOWO, ChannelAPA, Cheekswab.org, Disgrasian, Frances Kai-Hwa Wang, Jeff Yang (columnist, Wall Street Journal Online), Jook TimeKimchi Mamas, ReappropriateRice DaddiesSchema Magazine, Racebending.com, and a special partnership with Team Janet and Jeremy Needs You.

To add your site to the list, please go here.

***

About the Drive
170 in 7 will be running from September 17, 2012 to September 24, 2012. Our goal is to register 170 new potential bone marrow donors in 7 days in memory of Janet Liang.

To Partner

We would love to add more partners to this week-long bone marrow donor cyberdrive. To join, please contact Jenn for more information.

To Spread the Word

Please Tweet about the campaign using the hashtag #170in7.

Categories: blog, Featured

About the Author

Marissa Lee is one of the co-founders of Racebending.com

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