It was an all-too-familiar story to me; a young person, Sameer Bhatia, is diagnosed with AML (acute myelogenous leukemia). The same thing happened to one of my students three years ago, back when I was a high school English teacher by day (social media guru by night).
It's a life-and-death situation, and if you're member of a minority ethnic group (African-American, Indian-American), it's a hell of a lot harder to find bone marrow donors.
When I heard Sundeep Ahuja (also a Kiva board member) talking about his efforts to save the lives of his friends Sameer and Vinay at the >Play Conference at UC-Berkeley back in November, I knew I had to get an interview to see how he used social media as part of the effort to find bone marrow donors for his friends.
Ahuja's not taking all of the credit here; he gives an huge hats-off to Vinay's best friend, Priti Radhakrishnan, the driving force behind Team Vinay, and her partner-in-philanthropy, Robert Chatwani (Sameer's best friend). The team's actions in creating these two life-saving campaigns are sure to have a ripple effect throughout the entire Indian-American community, as thousands more people are registered in bone marrow registries.
Hopefully, this interview can serve as a social media and PR template for people looking to emulate their efforts, and start saving lives on a low budget.
Is there a strategic document for persons wanting to emulate you in doing
non-profit (life-saving) type outreach?
Great question. Though I haven't looked, I have to imagine that a document like this is somewhere out there on the web. The Team did develop a short playbook on how to launch and manage corporate bone marrow registration drives, and this guide has been very helpful in getting programs launched within companies (particularly in Silicon Valley). More generally speaking, I wrote a small post some time ago on the power of "empowerment marketing" and how we leveraged that at Kiva.org as well as for this campaign; it can be read here.
In your work with Priti Radhakrishnan, Robert Chatwani and others to find marrow donors for Sameer and Vinay, do you feel that social media really enabled your outreach, or that this could have been done as well in a Web 1.0 (circa 1997) kind of environment?
First off, I have to give credit where credit is due: Team Vinay and Team Sameer were both sizable operations of family and friends that mobilized their friends and eventually a whole community to drive bone marrow donor registrations to save the lives of Vinay Chakravarthy and Sameer Bhatia, both of whom had been diagnosed with Leukemia. Vinay and Sameer, as South Asians, each had a 1 in 20,000 chance of finding a donor match given the relatively small number of registered bone marrow donors in the community. The amazing efforts of Teams Vinay and Sameer have driven over 25,000 registrations since the summer -- one of which was a match for Vinay, and another for Sameer, and they are both doing well post-transplant (and at least three other patients have found matches as well!)
As one of the folks working specifically on the communications side through the summer, I can say that the "social media" effort played a sizable (though fragmented, as much of it was decentralized) role in driving these registrations, largely because social pressure from friends (implicit and explicit) was a strong motivator. Interestingly, though, given that the action was an off-line event (a cheek swab) usually held at specific times/places (registration drives), the helpvinay.org website, eVites, and emails drove more registrations than "Web 2.0" social networking groups and profiles. The one unique "Web 2.0" contributor worth mentioning was a collaborative video application powered by RapOuts which was used to distribute messages from celebrities and community supporters alike encouraging registration and participation (disclaimer: I've since become an Advisor to RapOuts). I guess the best way to summarize is that "Web 1.0" (and pre-web technologies like the phone!) drove action, and "Web 2.0" supported with awareness.
How much did conventional press releases help in the outreach?
I don't believe there were any conventional press releases, per se, but we did engage a couple of individuals at PR agencies to help us get radio announcements, local televsion coverage, newspaper mentions, and the like. Again, given the off-line nature of the action it's tough to quantify how much the PR actually motivated people to type in HelpVinay.org or HelpSameer.org, find a drive, and get registered -- but as a motivator for the Teams and the community, and as a method of raising general awareness, PR was quite helpful.
Do you feel that these press releases had a direct link to people of South Asian descent joining the bone marrow registry?
Though the outreach efforts described above were more broad stroke across neighborhoods and cities of varying ethnic makeup (even if targeted at neighborhoods and cities with large South Asian populations), there were also more focused outreach efforts to the South Asian community through community blogs, newsletters, and popular South Asian websites. It's probably worth noting here that the biggest source of registrations were drives set up at community events, religious establishments, and workplaces; on location at these places with large South Asian populations, drive teams were able to tell people as they walked by about Vinay and Sameer, and then get them registered right there.
Was YouTube central in your project's outreach, or was it merely parenthetical?
Though a few of the videos were uploaded to YouTube and somewhat promoted, the Teams primarily leveraged the RapOuts platform for its video efforts, largely because it's built to power campaigns such as ours.
Have any similar drives been organized in your wake?
Though there are several patients I'm aware of currently in need of transplants--and so if you're reading this, are South Asian and are still not registered, please visit samarinfo.org/drives to find a drive near you--I'm only aware of one other team that's coming together in a Team Vinay/Team Sameer type fashion; you can learn more at swab4bevin.com .
In the last week, some of the core folks involved with Team Vinay and Team Sameer soft-launched a campaign called "I-Believe". At its core, the message of the campaign is that everyone has the power to save a life--the question is do you believe, and the answer is of course "I-Believe".
The campaign is primarily targeted at college students and there are representatives on several campuses raising awareness for the campaign in an effort to drive Bone Marrow Donor registrations. Core to the campaign is a video featuring several prominent and relevant South Asians, viewable at helpvinay.org and on Facebook as part of the "Help Vinay" application. Earlier this week Sameer blogged about the need to continue the campaign for Bone Marrow Donor registrations in the South Asian community; you can read his post at helpsameer.org.
Thanks for this opportunity, Adam!
I recognize that this is a "social media" blog; according to Wikipedia, " social media describes the online technologies and practices that people use to share opinions, insights, experiences, and perspectives with each other."
That definition encompasses Web 1.0 tools such as the helpvinay.org website, making it very safe to say that social media played a PIVOTAL role in the Help Vinay and Help Sameer campaigns--and so in saving lives. As Web 2.0 tools come into maturity over the next couple of years I hope they'll help in not only spreading awareness but in driving action, making similar campaigns in the future that much more effective!
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