Lara Casalotti was in Thailand last month to work with an Oxford University professor who was researching migrant worker conditions when Casalotti started feeling pain in her lower back. What the 24-year-old master's student thought was a pulled muscle turned out to be a case of acute myeloid leukemia.
Casalotti's doctors told her she would need a stem cell transplant by April to save her life. For Casalotti, who is Chinese-Thai-Italian, chances of finding a matching donor are low. Because markers used to match stem cell types are inherited, patients are far more likely to match with a donor from the same ethnicity. National registries have made it easier to find matches, but ethnic minorities remain heavily underrepresented and mixed race patients have the hardest time finding a match.
According to the U.S. national Be The Match Registry, 3 percent of bone marrow donors identify as mixed race, and only a fraction of that number are Asian-European. (Casalotti's only brother, Seb, is not a match for her.)
Sujitpan Lamsam, Casalotti's aunt, told NBC News that the campaign extends beyond just finding a match for her niece. “[Helping others] is what she was meant for. This whole campaign is to get more awareness of the need to have mixed races and ethnic minorities register in the worldwide registry," Lamsam said.
Even more important, said Lamsam, are the results of that awareness. “We’ve been getting a lot of media attention, but we also want to convert that awareness to action.”
The Match4Lara campaign has gained a significant amount of traction, with celebrities such as J.K. Rowling and Stephen Fry tweeting their support. A video appeal featuring Casalotti's parents also made the front page of Reddit.
The campaign's goal to inspire action has been noticeable worldwide. Anthony Nolan, a leading charity in the U.K. that works to register bone marrow donors, saw an increase of 3,000 donors in the week after Match4Lara launched. And in Thailand, where Casalotti's family is working with the Thai Red Cross, one Italian-Thai man traveled eight hours by bus from Chiangmai to Bangkok to register for donation.
In the United States, Lamsam has been working with the Asian American Donor Program (AADP) and Asian-American groups to find a match.
Carol Gillespie, executive director of the AADP, told NBC News that they would like people to register in Casalotti's name to help find her the Thai-Caucasian or Chinese-Caucasian donor she needs. “The goal is to ultimately build a more diverse registry, but we also have committed to find Lara a donor,” Gillespie said. “We want to make sure we’re contacting the right demographic.”
There are two ways for individuals to register as a donor: at a local drive or via an at-home kit. Donors are asked submit a cheek swab and are contacted later if they are a match.
For Casalotti's particular case, Gillespie says that local drives are more helpful because they are faster than registering for home kits. “I recommend that [people] go to a live drive if they can, but the important thing is that they register,” she said. “I recommend that they do whatever is convenient for them.”