Life can change in an instant. One day you’re a hot shot Stanford grad working as a software engineer and obtaining your MBA from Kellogg at Northwestern, experiencing what feels like an accelerated trajectory to success, and the next you’re waking up in the hospital and being told you just had a stroke as a result of a rare condition called Arteriovenous Malformations (AVM). That’s what happened to Ben Munoz in 2006, at the mere age of 29. But, as is often the case, what can at first seem like the worst thing that’s ever happened can become life’s greatest teacher, and gift.
During an intense years-long recovery that included radiotherapy and neurosurgery, Munoz was unable to find the support he craved through traditional channels recommended by doctors, family and friends. Tired of feeling isolated by the weight of his unique experience, he leveraged his tech background to create an online support group for others living with AVM, originally calling it AVMSurvivors.org. The reaction to the offering was immediate and powerful – it was clearly filling a huge void in people’s lives. Munoz began talking with friend Scott Orn about the possibility of adding new communities, to help more people. Orn had just finished reading Seth Godin’s book Tribes and mailed it to Munoz. A few days later Munoz called Orn and the two emphatically agreed – they had to expand beyond AVM and create a community of support sites that included other rare diseases. In December 2007 they cofounded Ben’s Friends.
The network now has 35 rare disease communities that are active and thriving, and another 165 that are currently on a wait list due to capital constraints. Says Orn, “Every one of these is a result of someone writing us, and asking us to start a community. These personal letters are touching but also heart breaking because we often can’t do anything immediately to help.” One thing that will help is that they’ve recently established Ben’s Friends as a 5013c nonprofit organization, opening the door to foundation funding and corporate philanthropy while ensuring individual donations can be written off as tax deductions. They purposely avoided going the VC route, uncomfortable at the thought of having to charge members for access, sell user data, or find other ways to guarantee a return on investment that might compromise integrity, or trust – both vitally important given the sensitivity of subject matter being discussed between anonymous members.
Instead, they’ve leveraged Indiegogo campaigns and donation functionality on their homepage to raise approximately $77,000 over the past seven years, with Orn and Munoz collectively contributing about $30,000. The majority of this has gone to software fees (they use NING), with the remainder used to compensate virtual assistants (via oDesk) and the occasional contractor. It’s a shockingly minimal budget given how long they’ve been at it, and their continued user growth – currently registering 37,694 members and 80K monthly uniques, and is made possible by their 200+ volunteer moderators. These individuals are responsible for welcoming new members, keeping conversations going, and responding to questions whenever possible – sharing their knowledge on the subject, as they too are afflicted with the rare disease or condition the community was formed around. There’s also some monitoring to ensure members aren’t spammers in disguise, or sales folks pushing health cures, or that posts don’t become excessively negative – all rare occurrences, but important to screen out so members feel safe, and encouraged.
One moderator example can be found in Gail Penry, who was diagnosed with Lupus (Systemic Lupus Erythematosis) at the age of 54, fired from her job shortly after, and stumbled upon Ben Friend’s during extensive internet research. At first she was just reading the back and forth questions and conversations between other “Lupans,” observing that they often had parallel issues and concerns to her own, and that they seemed to be effectively crowdsourcing research and solutions. It soon became the place she found the best information and the most comfort and, wanting to give back, she responded to a request for new moderators and was accepted. Says Penry, “Sometimes I only extend my empathy – a member’s post just grabs me by the heart and I can’t let it pass. Feeling as though I get more than I give from these exchanges makes me want to give more.” And when she’s “flaring” with her disease she can drop off and come back later – the flexibility of the responsibility is necessary given the unpredictability of her pain. When moderator questions arise, she refers to the guidelines provided by Ben’s Friends, or heads over to the moderator community, where moderators across all rare disease communities support each by exchanging best practices.
Why rare diseases? Like many other things, it’s a numbers game – the diseases with the largest afflicted populations tend to already be well supported, and funded, by existing efforts. Bringing increased visibility to (and understanding of) the less common diseases can be a challenge. It’s one of the reasons why Rare Disease Day was created in 2008, and now occurs every year on the last day of February in conjunction with countless fundraising events around the world. Often times members of Ben’s Friends, including both patients and the family members of those afflicted, share events within location-based groups created on community pages, and meet up in person. Indeed, when asked if the online relationships he’s created online translate into the real word, Munoz responds with a quick, “Absolutely! I recently met up with a group of people for lunch in Los Angeles, and there’s a huge BBQ that happens in Texas every year – people are always finding ways to get together, and it’s not always for a formal event. Sometimes it’s just to have some fun.”
Munoz created Ben’s Friends from the perspective of a patient, but now that he’s in his second year of medical school – a decision that required him to walk away from the financial security he’d grown accustom to working within the technology sector – he’s able to see enormous benefit to health care practitioners, many of whom feel powerless when treating patients with rare diseases. Says Munoz, “After my experience with AVM and creating Ben’s Friends I became less interested in business, and wanted to devote my life to helping patients.” His network is now a go-to resource doctors suggest to patients seeking information and support, and the referrals go both ways, with Ben’s Friends members frequently recommending specialists they’ve found helpful. This occurrence is so common, and finding doctors that can recognize symptoms and provide an accurate diagnosis is so difficult, that Munoz and Orn recently launched a doctors directory, which is kind of like Yelp, but for doctors specializing in rare diseases.
Munoz and Orn acknowledge that financial constraints still limit treatment options, but with 40% of their users logging in from international locations, knowing where the best care is located is an important first step. And while many of their members continue to struggle with symptoms, they’re no longer struggling alone. “Community is the best medicine,” says Munoz, based on his personal experience of recovery. I have some experience with that too, and couldn’t agree more.