Thursday, March 17, 2011

My Submission to the Domino Project

Seth Godin's new venture is called the Domino Project. His team is trying to reshape publishing through it. Their first book is called Poke the Box and it's all about initiative, taking chances and succeeding in near impossible situations. I submitted Ben to their request for Initiators

Here is what I wrote: 

Hi Domino Project - I'm enjoying your blog and first book, Poke the Box. Great work.

My nominee is Ben Munoz. He's a friend of mine and had a stroke in 2006 caused by a rare condition called an AVM. He made it to the hospital and thankfully survived after emergency surgery. While recovering he was really isolated and lonely and couldn't find information on AVM, so he did something about it and "Poked the Box" by starting - a support network for folks with AVM. It's pretty amazing that in his greatest time of need and vulnerability, he did something to help others.

I helped him out a little and once we realized the incredible amount of support and information folks were getting out of the site, we started a couple more, and a couple more, and a couple more. Today, Ben's Friends ( has 23 support networks for rare diseases and services 8,000+ members and did 250k page views last month. Both metrics are growing at 10%/month but the love and support on the networks is growing exponentially faster through all the connections. You can find patient thank you's on our blog:

An important part of “Poking the Box” in this case is that AVM and these other diseases are very rare, so there is no profit motive for big health oriented websites to service these folks. Yet because these condition are rare, it's very unlikely that one person in their local network will have the condition, let alone enough people to start a support group. Also, if there is no profit motive, it’s really hard to raise money to fund it. This scared us at first, but we realized a lot of people needed us so we just started them anyways, a Poke the Box Moment. We soon realized two things: 1) The people we were helping were so thankful to have this support that they were eager to help by volunteering to moderate the networks, and 2) Everyone – from patients, to their families to our friends in the community knew they had to contribute a little bit financially to help us stay afloat. Today we have over 50 volunteer moderators across the networks and we’ve funded ourselves through small online fundraisers, like the one last year that coincided with a patient member running the NYC marathon 6 months after open heart surgery (

Btw - Ben had already started a couple communities when we stumbled upon Seth Godin's book, Tribes. We're very grateful to Seth for writing that book because in a strange way, we felt like it gave us permission to build out the networks. Building these networks seemed like a huge challenge and we had no idea how to fund or operate them. Seth's book gave us just enough courage to make it happen. Thanks Seth.


Scott Orn

P.S. You can hear Ben tell his story in this 90 second video: and check out the website here: