Scott's Bio

I’m the co-founder of this site and help run a group called Ben’s Friends ( that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called We realized we were helping a lot of people so we started many more. Today we run 30 online support groups and are growing rapidly, thanks to the wonderful volunteer moderators that help manage the communities.

Find out more about Ben’s Friends at and watch our 60 second YouTube Video at

I’m also at these sites and love new friends!
Twitter: & Facebook:

If you would like to help us spread the word about patient support, please post about us on Facebook, Twitter and Blogs. Pasting in the URL, or Internet Address, of this community will make it easier for others to find us and get the support they need!


Thank you for all that you do. You do not hear that enough from us. Without this site I would feel so lost and alone. God bless you, Ben and all the volunteers here on this site. Thank you from the bottom of my heart. I am a hugger so I am also sending you a hug. I hope many blessing come your way. Keep up the good work and always remember to take care of you.

ahh, thanks so much BigsBug and Sustain. You both made my day. Really appreciate it. I passed on your message to all the behind the scenes volunteers. thanks!

Thank you for taking your time to help others!!! I know you must spend a lot of your own time to make this happen, to keep up with its success, and to watch over all of these forums. I appreciate that you do that for all of us. You are truly unselfish and giving; you have a gift. 'Thank you' doesn't seem adequate!!!

you are so incredibly kind Tee! thanks so much. And your message was pefectly timed as I just got done moderating a disagreement between some members on another site. I was feeling tired but now you perked me back up.

You are welcome, and it is DESERVED praise for what you do- I mean it!!! I sit here and think, "This guy must spend so much time on here...and it never crashes...and all these different sections of rare diseases are running simultaneously, and here he is telling a new member, 'welcome'....geez that takes a certain kind of person to do that. Rare indeed." You are one of those rare individuals who isn't seeking credit, kudos, pay, etc.; you just care and DID something about it. That's pretty incredible.

Thanks Tee. That means a lot. really appreciate it!