Akin to David's post this morning about his work with Sophia's Garden--an online community for families with terminally ill children--we talked this afternoon with Armen Berjikly of The Experience Project, a social network where people are invited to be open about their challenges and truths (illnesses, life conditions, addictions, failures, relationship woes, etc.) in a safe and anonymous environment.

About three years ago, Berjikly, a Stanford-trained engineer with entrepreneurial chutzpah, learned that a friend of his had suddenly developed multiple sclerosis (MS), a disease that tends to strike young women in their 20's. He wanted to help and sought to find as much information on the insidious disease and its possible treatments as he could. His online search revealed a tremendous amount of valuable, but highly technical (medical) information. Berjikly began translating the research findings into layman's terms for his friend. In doing so, he realized there was a need for this sort of resource. After three years of evolutionary work, he has developed a powerful collaborative social network built around the strength of being vulnerable.

[More:]

When Berjikly began researching MS--an highly variable syndrome fraught with wildly different manifestations in different sufferers-- he discovered that a good deal of the latest research material on the topic was, not surprisingly, written for the medical community in "medicalese," making it difficult for most without medical training to translate the specialized language into information on which to base practical action. As he began to amass a formidable knowledge base, he created a site for the material for MS sufferers that also included a discussion forum (aka bulletin board).
Because many MS sufferers are often isolated, by their debilitating condition, the site made it possible for them, sometimes for the first time, to share their experiences, treatment plans, hopes and support with others...to create community. For many, this was as important, if not more important, than the pure medical information. That is when things really took off.

On other bulletin boards focused on a disease, participants were often discouraged from discussion other elements of their lives...they were admonished to "stay on topic." But for 20-something woman suffering from MS, there was so much more than their ailments to talk about. Berjikly realized that his network needed a slightly different--holistic--approach.

And that by taking a holistic approach to participants--while still focused grounded in their need for support--he could countless others, suffering not only from MS, but from other health or emotional conditions. Often these conditions were hard to talk about with family, friends or colleague. Berjikly began developing an application--a social network or online community site--with built-in anonymity, which allowed individuals to self identify based on life experiences--not only illness-related experiences, but also other attributes of their lives: single mothers, addiction sufferers, mountain bike enthusiasts, bipolars, quilters, wind surfers, etc.

According to Berjikly, participation is simple; it begins by filling using a "I..." format and filling in the elipses (...). Examples include those who have self-identified on the site using statement such as: I am an alcoholic, I attract weirdos, I lost my grandfather, I had a gum graft, I hate my life, I am fat and so on and so on.) They suggest you select the top five or six ways you identify yourself most strongly. You are likely to find others who have the same feelings, have found solutions or can just offer support when you need it. Sometimes it's just reading a good joke!

Throughout the process of self-identification, revelation and bonding with others, participants can maintain their anonymity and only reveal more about themselves in private conversations as they felt comfortable doing so. The result of this three-year effort is The Experience Project.

Berjikly realized that what he had created was an niche market with highly stratified demographics--a strong sell for advertisers. He was, however, dedicated to supporting his project in a way that would not threaten the trust (and therefore the integrity) of the community. He has employed a business model designed to provide as much freedom and openness as possible. Participation is free. There are already some advertising links on the site. However, the Experience Project's investors currently encourage Berjikly to concentrate on building a strong community, not on ROI.

Later, however, he plans to implement an advertising/sponsorship model--that he sees as a win/win for both participants and advertisers. It will bring together the right advertisers with that part of the community hungry for the information, supplements, treatment, research, etc. and open to the products the advertisers are bringing. Additionally, because of the highly "nichified" nature of the community, Berjikly hopes to allow research groups to find appropriate study participant to further the effort to deliver new treatment options for those suffering from their self-identified conditions. Berjikly and his team are committed to protecting this vulnerable community from advertising or sponsorship pressures that could potentially influence content. He sees open dialog--both positive and negative--and business transparency as keys to building trust and a strong community.

Background
Berjikly, graduated with honors with a Bachelors in Computer Science from Stanford University. His primary research focus was Human-Computer Interaction, where he worked closely with professor Clifford Nass, author of the ground-breaking HCI work, The Media Equation. Later, he went on to obtain a Master's Degree in Management Science and Engineering, also at Stanford, with an emphasis on Organizations, Technology and Entrepreneurship. Berjikly was also a Mayfield Fellow, a prestigious fellowship that provides intensive training in entrepreneurship for those with an engineering background. He has lead numerous successful Internet startups, including FileDemon, Do Everything and several other online patient health communities designed to sponsor hope through research and community.)

For more info, visit www.experienceproject.com or contact Sayo Ogundiran, Atomic PR in San Fran, at 415-402-0230 or sayo@atomicpr.com

-- Ann Marcus