With just seven weeks left before Nalini Ambady, professor of psychology, goes through another round of leukemia-induced chemotherapy, a team of students, colleagues and peers have come together in an international effort to find a bone marrow donor before then.
“Right now, the cancer is technically in remission, but it’s not a long term solution,” said Taylor Phillips, a second-year doctoral student. “In a few months it will probably come back, and she’ll have to do chemo again, and that cycle would just continue forever. So, it would be best if we could find a match within that time frame, because it’s best to have a bone marrow transplant when your body’s healthy.”
Ambady is South Asian, which means her match most likely will be South Asian as well. However, matches can only be found from the pool of registered donors who have submitted their DNA through a cheek swab and entered it into the registry.
Unfortunately, South Asians are “not just underrepresented [in the registry], but underrepresented even in terms of how many you’d expect there to be, taking into account their being a minority,” according to Phillips. To address that, Ambady’s students have created a worldwide effort to register more people, focusing on the South Asian demographic.
Ambady was unavailable for an interview.
“We were at both days of Holi doing drives,” Phillips said. “We actually got 400 people registered, and almost all of them were South Asian, so that was pretty amazing.”
The students’ efforts, from hosting registration drives to starting initiatives in India, have attracted international media attention for their use of the Internet and social media.
“We’ve had NBC and CBS Bay Area come and talk to us, there’ve been articles in the Wall Street Journal, and there are a few newspapers in India,” Phillips said. “I think the big thing is the fact that social media exists, which makes it a lot easier for almost anyone to have a big campaign.”
The effort’s leaders emphasized the value of online coordination.
“It’s pretty amazing how all the people are putting all the efforts together, from all the places,” said Fiona Lee, a first year doctoral student. “We did a lot of drives on campus, her colleagues are doing it there and we’re collaborating.”
“We have a website where people can find details about how to help, register for free and help host a drive. They can also just spread the word, which is the big thing for us,” Phillips added. “We also have a Facebook page, a Twitter account and this great informative YouTube channel that explains the whole process.”
Students have focused their efforts primarily on spreading awareness, arguing that common misconceptions about the donation process have hindered registration efforts.
“There’s this big myth around bone marrow donation. A lot of people think it involves this crazy needle being stuck into your hip or something like that, which is how it used to be,” Phillips said. “It still is, a small percent of the time, but almost all the time it’s just a simple blood transfusion process.”
When Ambady relapsed in November, many of her students were caught by surprise.
“It was kind of really shocking,” said Rachel Grunwald, who was an undergraduate at Tufts with Ambady and who helps oversee the effort’s website. “But it’s almost been kind of amazing, to see how strong she’s been through this entire thing.”
According to her students, it’s been business as usual for Ambady.
“When we went to the hospital for the first time, [Ambady] was like ‘Oh, I have leukemia, but it’s fine, just keep calling me and come see me. We’ll just have lab meetings at the hospital, it’s fine,’” Grunwald recalled.
The lab has continued to run its normal hours, with Ambady’s students simply integrating the recent cause into their everyday lives.
“We’ve still continued to do research, so we’ve been having lab meetings still,” Phillips said. “It was recently Dr. Ambady’s birthday, so we had hats and cakes and all that stuff. I think we are definitely coming together.”
“She’s been helping me through grad school, and she’s always there for research questions. She’s done that for so many people, so it’s such an easy situation,” Phillips reminisced. “We find a match, and things will work out. So if the solution’s there, and it’s so easy to do, even if it’s time consuming, why would someone not do it?”
Some students have found overlaps between their research and their efforts to recruit potential bone marrow donors.
“We’re in way over our heads for all the PR stuff and the website,” Grunwald said. “The one thing that’s kind of funny is that we’re all social psychologists, so we’ve been thinking about how you encourage people to contribute to a cause, and how you convince someone. So that’s one aspect where we feel like we have some knowledge to bring to the situation.”
Future efforts will include a “Save-A-Thon” competition, to be held at the d.school on Saturday, and other programming both on campus and internationally.
“I’m super optimistic that we will continue getting even more traffic,” Phillips said. “If cat videos can go viral, then a Nalini video that is important and meaningful can go viral.”