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The parents of 6-year-old Thor Forte remember every detail from the moment they found out he had sickle cell anemia: the counselor from Jacksonville, their seats in the living room, the way their hearts broke. In a Be the Match video, Thor’s mother plants a gentle kiss on her son’s cheek and explains his only chance at a cure: a bone marrow transplant.
Videos such as Thor’s are the latest push by Be the Match, one of the largest bone marrow matching programs in the country, to attract more donors. While the registry is massive—with over 19 million people already listed as potential donors—only one donor in 430 people will go on to donate, mainly due to genetics. That’s why it’s important that the organization continuously sign up potential matches for the 20,000 individuals with blood diseases and cancers who might benefit from a bone marrow transplant ever year. And that’s where videos such as Thor’s—and the reach of social media in general—has been a godsend.
“A lot of times, when we go down that path with featuring a patient—because we’re telling the story and it resonates with the audience—we’re able to see an uptick of people joining the registry,” Melissa Neill, who works on Be the Match’s social team, told the Daily Dot. “(Analytics) will come back and say, so far, it’s driven this many thousand people to join the registry. And the great thing about doing that work is that those stories are naturally going to resonate with different types of audiences.”
Be the Match had 9 million donors in 2011, when its team was posting simple YouTube videos with photographed faces of people who needed a match. But in recent years, a multi-thronged social media strategy and more heart-tugging videography have helped boost the registry count by an additional 10 million.
This great success is also due in no small part not just to the emotional videos, but to the social media team working with famous YouTubers and starting viral challenges.
Chris Betancourt, who was re-diagnosed with leukemia September of last year, worked with Be the Match to fulfill an item on his bucket list—setting a record for having the most people join the registry within 24 hours. For his Lemons for Leukemia challenge, Betancourt asked individuals on social media to bite into a lemon while joining the registry—and to film the whole thing encouraging others to do the same.
“We saw this, and as a team, we knew very quickly this was going to take off,” Peña said. “Within 24 hours, the (Be the Match) social media team did a video of them doing the challenge and then challenged Robin Roberts and the entire Good Morning America crew, because she has a personal tie to the mission.” Peña noted that Roberts is a survivor and had worked with Be the Match previously.
On March 1, the Good Morning America team accepted the challenge through Twitter “within minutes,” Peña said. The show also devoted an entire segment to talking about the registry, which led to thousands of new registrations.
While the national television appearance was obviously a boost for donors, a popular YouTube comedy channel called Good Mythical Morning, which featured Lemons for Leukemia just four days after GMA, was just as effective. Channel creators Rhett McLaughlin and Link Neal agreed to have Betancourt on the show after he reached out to the YouTubers saying he was a fan.
“What’s fascinating is that we broke the record on March 1, with over 3,700 registering online that day,” Peña said. “But because of Good Mythical Morning alone, we reached more than 6,000 registrations on March 5.”
Rhett and Link told the Daily Dot that although their show is “typically a lighthearted comedy,” they were up for the challenge of sharing the message and doing a swabbing on the show to show people how easy it is to “save a life.”
“The comments and social media posts about the episode were really encouraging,” Good Mythical Morning told the Daily Dot in an email. “A lot of people were letting us know they joined the Be the Match registry. And we were ecstatic to hear from Be the Match that signups really spiked after our episode.”
Rhett and Link also worked with the Be the Match public relations team to dispel myths about donating bone marrow.
“One of the challenges is there are still a lot of misconceptions about the idea of marrow donation and people think it’s extremely painful,” Neill said, but it’s not. Patients can be asked to donate in one of two ways, and both methods do not cause severe pain, though patients may feel sore or fatigued, Neill said. Dispelling these kinds of misconceptions is where YouTubers can jump in with the real facts.
“If you look at any of the influencer videos that came out around Lemons for Leukemia, you’ll see how articulate these influencers were about our mission,” Peña said.
Moving forward, Be the Match wants to work on educating audiences about how the transplantation process actually works; they also would like to reach more people of color. Currently, the majority of donors in the registry are white. Since patients are more likely to match with someone from their same ethnicity due to genetics and tissue typing, Neill said, a white cancer patient—whose HLA type is less complex—has the highest chance of finding a match with the organization. That puts patients of color at an extreme disadvantage.
While Be the Match’s social media team isn’t targeting specific races on social media to urge them to donate (it doesn’t even receive analytics on race from social networks anyway, Neill said), it’s fine-tuning its patient stories to reach audiences in an emotional way. Be the Match features people of color in their videos to show that they are represented and matter—but they are not as represented on the registry as they could be. Be the Match aims to diversify the registry, but the program will always step into social media conversations about these topics naturally and not intrusively, Peña said.
“We’re always educating people on social [media] with the stories from the actual donors, from the actual recipients on how (the process) really is,” Peña said. “We will never… try to insert ourselves into a conversation that’s happening where we can’t be relevant and it’s a stretch.”
Grace Speas is a news reporter, covering streaming entertainment, internet culture, and viral politics.