Whitehouse AAPI Conference Call on Leukemia and Bone Marrow Recap

Whitehouse AAPI

Last Thursday I was able to listen in on a conference call hosted by the Whitehouse Initiative on Asian Americans and Pacific Islanders as representatives from both government agencies and grassroots organizations shared their experiences in spreading awareness for bone marrow donation. The speakers on the call all brought an enormous amount of experience and knowledge to the discussion. They included representatives from:

  • The Health Resources and Services Administration, the government agency that is ultimately responsible for funding public health initiatives like cord blood donation and blood/stem cell transplant centers (they have a contract with the National Marrow Donor Program to facilitate bone marrow donations);
  • Asians for Miracle Marrow Matches, an organization based in California that has been recruiting bone marrow donors for over 20 years;
  • The Asian American Donor Program, an organization also based in California that runs 400 drives and recruits 14,000 donors annually;
  • And finally, most poignant to me, Team Janet as represented by Janet Liang herself and her friend Tammy. Even though I was sitting on the phone thousands of miles away, it was amazing to hear her voice as she shared her story.

Janet’s story is really incredible. After posting her video plea on Youtube in January, it got picked up by Reddit and her donor campaign exploded. They received 10,000 Facebook ‘likes’ that week. All in all Team Janet has registered over 13,000 new donors, 10,000 of whom joined since January. And while Janet has unfortunately not found a match yet herself, she has heard word that at least two matches for other patients have been found from people registered through her campaign.

It’s amazing and humbling that so many people have decided to dedicate their lives to this cause. The number of donors that these organizations bring in is pretty staggering; 10,000 in three months? 14,000 per year? Cheekswab is definitely a small fish in a very big pond. But hearing everyone talk about their accomplishments was such an inspiration, because I know they all started somewhere small. And with dedication and hard work, they really are making a tangible difference in the world around them.

Bone marrow advocacy is often rooted in a beautiful irony. While I don’t know the back stories of everyone on that call, the way most people become engaged with the cause (at least in my experience) is in reaction to devastation. Someone they loved needed a transplant but couldn’t find one, or they themselves were diagnosed with cancer. But as a result of that devastation, which seemed so insurmountable in the moment, here they are now. Speaking on a conference call with the Whitehouse and recruiting thousands of new donors per year. Saving the lives of potentially thousands of other people that they will never meet. Cancer is one of the deepest, darkest pits that humanity has to offer, and yet it produces an altruism that reaches far beyond social, ethnic and generational lines.

Despite all that she’s done, Janet is still struggling. She now has until June to find a donor, so if you haven’t registered yet, please consider joining the bone marrow registry now. And please keep her in your thoughts and prayers, and continue to spread the word!

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