It is with great pleasure were able to publish our Q&A with Ben Munoz, inspirational leader and founder of the non-profit Ben’s Friends. We asked Ben a few questions about Ben’s Friends and running patient support communities, and the success he has seen.
What was the impetus to start Ben’s Friends?
I suffered a brain hemorrhage in 2006 caused by an AVM. I made it through the stroke but still had to deal with recovery, brain surgery and two years of waiting for the AVM to heal. I wasn’t able to connect with other AVM survivors, so I started my own online community, AVMSurvivors.org. One of my friends saw the success of this site and suggested creating more patient-based communities for other rare diseases. That’s how Ben’s Friends was started.
How does your team select what communities to launch?
We maintain a long list of patient communities to launch. Requests are made by friends, family and members of existing communities. Our moderator support team reviews the requests and selects a new community from the list based on demand and fit with our community management model.
Are the community managers employees of Ben’s Friends, volunteer run or combo of both?
The community managers are all volunteer run, but supported by a small part-time staff from Ben’s Friends.
What makes a good community manager for these communities?
99% of our community managers have the disease or have a loved one with the disease. The type of commitment and dedication that comes with personal experience can’t be bought or taught.
In a community about a rare disease, how valuable is peer support and feedback?
A patient’s level of hope and happiness before and after joining a patient community can be night and day. Many patients suffer depression, loneliness, and fear until they are able to finally connect with others like them. Sharing experiences and knowledge that only comes from be affected by the disease is deeply satisfying for both individuals.
Do you have a favorite moment that has taken place in one of your communities?
One of our patients was told her brain condition was inoperable and so she came to the community looking for solace. The members informed her she probably didn’t have the right neurosurgeon and sent her to one of the world’s experts. There, she underwent surgery which completely cured her. That shows the incredible power of connecting through communities.
Have you seen or heard ways how Ben’s Friends communities have extended into the offline world?
Yes, many members organize annual picnics or get-togethers to meet friends from around the country and around the world.
How many communities do you envision running in the next three years?
Today, we have 30. In three years, a reasonable goal is to have 200.
How can our audience help support Ben’s Friends?
We are a tiny nonprofit based in Austin TX — independent from the large pharmaceutical companies and rely heavily on public support. Any support is greatly appreciated. The easiest way is to participate in our annuall @indigogo fundraiser at http://bit.ly/1u0t3jP
Our thanks to Ben Munoz for taking time to respond to our Q&A and we wish the amazing team at Ben’s Friends the best with their fundraising efforts.
Sincerely,
James Clark, CEO, SocialEngine
