• What is Cheekswab?

    What is Cheekswab?

    Cheekswab is an initiative to register minorities for the National Bone Marrow Registry.

  • Joining the Registry

    Joining the Registry

    Joining the marrow registry is simple and painless. Understand your commitment and rights as a donor.

  • Attending a Marrow Drive

    Attending a Marrow Drive

    Are you attending a drive soon? Find out what to expect, information you need for forms, and other details.

  • Requesting a Swab Kit

    Requesting a Swab Kit

    Unable to make a drive in your location? Request a swab kit directly from Marrow.org!

  • Does it Hurt?

    Does it Hurt?

    We understand that many people have fears or worries about becoming a marrow donor. Let's address some concerns.

Help Joon Find a Stem Cell Donor

Team Joon

This is a guest post from Joon's father, Patrick.

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.

More info about Joon can be found on the blog: http://teamjoon.net

Save Nina

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.

If you're in Southern California the Nina Needs You facebook page is active with drives taking place in the LA area.

One day I hope to not have to write any more of these drive announcements. For every new person who joins that day gets one day closer.

The First Year of Cheekswab

Pre-Launch Whiteboard

Pre-launch to-do list for cheekswab.org

Admission: when I launched this website almost exactly a year ago, I was so nervous.

I had worked so many hours on this site. I'd spent Friday nights and Saturday afternoons at Starbucks, writing and re-writing the content of every page, sometimes walking to my car with effectively a paragraph of text after 4 hours of work. I knew the road was long but not insurmountable. I knew that God gave me the abilities to finish the content and technical details to push the site live. Much like my time in the hospital, my time creating Cheekswab was slow, and taken a day at a time. And in faith that one day those steps would not be in vain.

I remember putting the link to cheekswab on Facebook. That's when the nerves were strongest. Would anyone care? Would anyone help, would anyone join? Were the hours and effort I put into this site all in vain? I had so many doubts. But I wrote the status and pasted the link. I took a deep breath and clicked "share."

The support from friends and family was overwhelming.

The link was re-shared over and over (and over) again. Visitors begin to hit the site from around the world. I received emails and messages from people to lend their encouragement and support for the cause. And even greater than that, people joined the registry.

It was such an amazing day to be alive.

New Registrants Completing Forms

Signing up for the registry

I made a promise on my hospital bed. But it wasn't just to myself; it was also to my nurses, my doctors, my family, my friends, everyone else I saw who was touched by this disease, and to God.

It was the acceptance of the burden of knowing the reality of cancer. It was the promise that because I now knew what it was like, I would never forget it. I would never turn a blind eye or a callous disregard to those who stood in my shoes. If I could do something about it, in my limited capacity as a non-medical professional, I would.

Speaking

Speaking at a drive in February

I did a lot of things this year through Cheekswab that I never expected to do. I spoke publicly to more people than I ever expected for anywhere from 5-45 minutes at a time. I manned booths at conventions and shows. I put my face and my story out there for the scrutiny of others. I invested time and money into something I really believed in. I coordinated drive supplies, volunteers, and venues.

I became invested in the lives of people whom I'd never met from across the Internet. I watched people I care for pass away, and their friends and family members cope with the loss. I watched people I care for survive, with a newly appreciated love and vigor for life. I met people who donated marrow graciously to people they didn't know, solely because "it was the right thing to do." I met other fighters for the cause and heard their own inspirational stories, whether it was their own medical history, the death of a loved one or conviction placed within them by a friend.

Volunteers

Volunteers who help make drives possible

18 months ago Cheekswab was nothing but a dream. An idea I'd mention randomly to close friends and family, just to see if they'd give me a good reason not to follow through. It was one of those "wouldn't it be nice" ideas, more idealistic fantasy than concrete plan. I didn't know where to start. I didn't feel qualified, I didn't think I had the necessary skills or personality.

Even after a year things are still very much a work in progress. But luckily since day one I haven't walked this path alone. There's been an incredible system of support, including BeTheMatch regional coordinator Juliette Williams, other contacts from Be The Match, and a tireless group of friends and supporters who are willing to help me staff drives/complete kits.

What a year it's been; 463 new donors and over 10,000 independent visitors to cheekswab.org in 2012. Here's to new and even more exciting times in 2013, and even more saved lives.

Cheekswab has been a dream come true for me, and to everyone who has been involved in any way, shape or form, I thank you.