Global Gene’s podcast interviewed Ben Munoz recently about his experience as a survivor of an arteriovenous malformation stroke, connecting with a fellow AVM survivor, and eventually co-founding Ben’s Friends. 

Ben shared with RARECast host Daniel Levine how fortunate he was to have survived the stroke and not suffer anything major, but that the couple years after the surgery was filled with a lot of fear and anxiety. 

“It’s just this looming, pending doom of maybe one day I’ll have another stroke,” explained Ben.  

The recovery period, for Ben, was a period of emotional turmoil and confusion. Fortunately, he was able to talk with a family friend who had an AVM and thought about how it might be like to connect with other survivors as well. With his background in software development, he was able to put up the website AVMSurvivors.org. He emailed other survivors through a couple of mailing lists he found online and later on, people started joining the community site. 

His friend Scott Orn saw how amazing AVMSurvivors is and later on suggested creating similar communities for other rare diseases. 

“So we brainstormed and we came up with an idea for a nonprofit called BensFriends.org which would be a hub of communities just like this for people with rare diseases and the goal would be emotional support for patients with rare diseases,” recounted Ben.

Ben proudly shared the big part played by the moderators for the success of Ben’s Friends communities. “One of our secret sauces is that we’ve got amazing moderators…. We’re very well-run, almost professionally moderated communities but actually the moderators are volunteers who also have a disease.”

When asked if there is anything people get from the forum that they did not expect, Ben shared how life changing doctor recommendations members get from the communities can be.

He shared the story of an AVMSurvivors.org member named Lisanne, who was told by her physician and surgeon that they couldn’t operate on her AVM and to maybe just alleviate the symptoms with medications. Through the community, Lisanne found a very experienced surgeon who successfully removed her AVM.    

To learn more about what Ben shared in the podcast, listen to the episode here.