It started with Ben, a stroke, and AVMSurvivors.org
In 2006, Ben Munoz suffered a rare form of stroke called arteriovenous malformation (AVM). Unable to find the support he was looking for on the internet during his lengthy recovery, he created a patient community AVMSurvivors.org in late 2007 to find others like him.
Patient Communities for Others
When Ben started to connect with other AVM survivors, it became apparent that “community is the best medicine.” His good friend Scott Orn (and later Eric D. Kroll, Haley Gallant, John Stamler, and hundreds of volunteer moderators) joined Ben in founding BensFriends.org, with the sole focus of creating and operating safe, compassionate communities for people who need them (including patients and their families & friends).
Since those early days, Ben and his friends have started dozens of communities through Ben’s Friends, helping hundreds of thousands around the world. We now have over 30 communities providing support for patients and caregivers dealing with conditions from Atrial Septal Defect to Von Willebrand’s Disease. We have approximately 50,000 members around the world, and over 100,000 people visit our sites each month.
A Message From Ben
“I’m forever thankful to the neurosurgeon for saving my life. However, each time I left the doctor’s office or the hospital during my treatment and recovery from the brain hemorrhage, I felt lost and lonely. How am I supposed to know what to do next? The first few months after my brain surgery was an emotional roller coaster.
The turning point came when I was put in touch with a friend of a friend who had been through a brain hemorrhage like mine and knew what it was like. We spoke for a long time and he answered the million questions that I had about treatment and recovery. I wanted desperately to connect with others who also had an AVM brain hemorrhage and talk more about the emotional aspects of this life-changing experience.
I was able to put together a good enough web site to invite a few people from a mailing list to come join me in an open discussion of what we were going through. I was so thankful to connect with others who knew what I was going through and members who joined felt the exact same way. It became apparent as the community doubled in size, again, and again, that we had created something special.
We wanted to share that emotional connection with patients of other rare diseases, so we created Ben’s Friends.”