Mixed Match: a matter of race

From left: Athena Asklipiadis , Krissy Kobata, and Jeff Chiba Stearns. Krissy is 27 years old and part Japanese/part Caucasian with Myelodysplastic Syndrom (MDS) and is actively searching for a bone marrow donor.

 

In 2007 filmmaker Jeff Chiba Stearns heard from a friend of his, who was a cancer survivor, about a young SFU student who was looking for a bone marrow donor. What complicated things was the man’s race. Part Chinese and part Caucasian, it made it more difficult to find a match. Stearns’ friend pointed out that as a hapa—part Caucasian, part Japanese—Stearns would have a good chance of being a match. Since matching is based on genetics, they were looking for more hapas to join the registry. Ultimately, Stearns says, he didn’t join the registry, “partly for a lot of the same reasons other people don’t join. I was busy, I didn’t know how to, and I really didn’t understand the complexities associated with multiethnic matches and how hard it is for mixed people to find a match.”

The experience resonated with Stearns, though, and he is serving as Director and Executive Producer of Mixed Match, a documentary currently in production that looks at the issue of finding bone marrow matches for mixed race people facing life-threatening blood diseases.

The Bulletin talked to Stearns about Mixed Match and the issues the film raises.

You’re known primarily as an animator. What made you decide to make Mixed Match?
Around a year ago I was approached by Athena Asklipiadis, founder of Mixed Marrrow (www.mixedmarrow.org). She mentioned that she wanted to create a documentary to raise awareness for this cause and the complexities associated with finding matches for multiethnic people. Hers is the only group in the US that specifically targets multiethnic people to join the national registry in the US, which is Be The Match. After I talked to Athena and learned more about the topic, as well as read articles about patients who were searching and read research on the science behind it, I realized it was something I had to take on as a documentary subject.

This is very different from other film projects you have been involved with—does it signal a new direction for you?
This is the first medically-related documentary I’ve ever worked on. But I don’t want this to feel like a medical documentary. I want this to be a character-driven documentary that captures the stories of the patients and subject we’re working with. I want their stories to resonate with the audience and so the call to action is to get more people to join their national registries and consider donating cord blood to stem cell banks. I am trying to find a way to incorporate animation into the film, since I have a huge love for the medium of animation. I love animation and I love documentary so it’s great when I can create this hybrid of both in one film. What I also like about this topic is it continues to explore my love of the topic of multiethnic identity.

It sounds like you’ve become emotionally invested in the topic.
A lot of these patients are at a crucial stage in their lives where identity is starting to play a role in how they understand the world around them. It’s difficult when their mixed heritage is the direct reason why they are having such a hard time finding a match. As well, with the increasing number of mixed kids being born today, especially in the Japanese Canadian community, it’s difficult to find enough mixed people of my generation to join the registry since you have to be over 17 in Canada to join the registry.

You talk about not knowing the issues when you were first asked to join the registry. I’m with you there. What are the issues?
Race and ethnicity play a big role when it comes to finding a marrow match for those suffering from fatal blood diseases. A lesser-known fact is that in order for a marrow or stem cell match to occur between a patient and a donor, genetic markers on cells must line up. These markers are inherited from parents, so their children are a blend of both their parents’ markers. This means that for mixed patients, their mono-racial parents and relatives will not likely be a match, and their siblings only hold about a 1 in 4 chance of being a match. Many markers on the cells are specific to certain ethnic groups so multiethnic people have a difficult time when their tissue typing has unusual or uncommon combinations. To put this in perspective, if your background is Egyptian, Japanese, and Russian, there is a likely chance that only another person with a similar ethnic blend could be a possible donor if you are diagnosed with leukemia.
Our film addresses the fact that every year over 30,000 people in North America are diagnosed with life threatening blood diseases. For many of them, a bone marrow transplant is their only chance at survival. Of the seven million registered bone marrow donors and 100,000 cord blood donors in the US, less than 3% are multiethnic. This statistic, although proportionate to the population of mixed people in the country, is a real challenge for a mixed patient, given the endless variety of possible genetic combinations in the registry. Finding a multiethnic marrow match in the public registry is akin to finding a needle in a haystack or winning the lottery.
According to the 2010 US Census, the number of people who associate with having more than one ethnic background has increased by almost 50% since 2000. But despite the rapid growth of the multiracial population all over the world, people don’t realize the risks that lie ahead for mixed people when it comes to blood diseases, and the almost endless search for a donor match.

Those are sobering statistics, how will you bring the subject matter to life?
As I said, I don’t want this just be another medical documentary and it’s the human angle that will ultimately  touch viewers and keep them engaged. We’re going to show the lives of young patients and their families as they struggle to overcome life-threatening blood diseases. Mixed Match will be a character-driven documentary highlighting a number of exceptional, courageous, and inspiring people. The film will follow recently-diagnosed multiethnic patients in search of donors. Some of them are struggling to hold on to hope through countless rounds of chemotherapy while also searching for a match. We also look at a patient who is in remission after a successful stem cell/marrow donation. Another patient, who ultimately succumbed to his illness story, has his story told through his surviving family members. On an uplifting note, the documentary will feature an emotional reunion between a donor and patient after a successful transplant, with the two meeting for the very first time.
Mixed Match is ultimately a human story told from the perspective of youth who are forced to discover their identities through their illnesses. Their mixed backgrounds threaten their chance at survival, highlighting why in this day and age, race still matters.

The patients are looking for mixed race donors and you’re looking for donors of any race to finish the project. What’s your goal?
We have been able to secure enough funding to start the project, but we don’t have enough to complete it, which is why we decided to try this venue. There are still so many more stories we need to capture and more footage to film with the subjects we’re working with now. We have a number of perks we’re offering on our website (www.indiegogo.com/mixed-match). The contribution amount that you are able to fund will determine the perks you will receive. It is our hope to raise $25,000 to cover expenses in the production and post-production stages.

What other projects do you have in your back pocket?
Right now along with Mixed Match, I’m also working on another incarnation of my animated short film Yellow Sticky Notes. This time, it’s an animated anijam called Yellow Sticky Notes: Canadian Anijam. It’s where I get 15 animators from across Canada to contribute their own section of animation and together they form one big animation, although no animator knows what the other animators are doing. It’s going to be a really amazing showcase of animation talent from across Canada and we’ve got some super talented animators working on the project, some of whom have even been nominated for an Academy Award for their animation work, like Cordell Barker, who created the NFB hit, The Cat Came Back. As well, I’ll also developing another feature length doc, entitled Mixed Media about multiethnic representation in film and TV. We’ve already interviewed some mixed Canadian actors such as Julie Tamiko Manning and Glee’s Patick Gallagher. That said, Mixed Match is my main priority right now and we’re really hoping to get back to filming this summer when we can secure a bit more of a budget. So we really appreciate if people could helps us out by donating at www.indiegogo.com/mixed-match. We’ve got some amazing perks and incentives for their generosity.