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 In the Begining

The winter of 2008 was definitely a season of change. I had just gone through a bad break up with the girl who I'd thought I'd be spending the rest of my life with. I had to move to another city and start my life over again. This time around I knew I wanted to do things differently. I wanted to do something to make a positive difference.


I'm not sure if I chose Moebius or if it chose me. When I was a kid my parents didn't know what my condition was. They didn't have any support other than the immediate family. They gave everything to taking care of me. When cancer came knocking on their door, they continued to put me first and they were both gone before I was 16. I always knew I wanted to do something to pay them back for all they did for me. I didn't find out I had Moebius syndrome until my ex figured it out looking through old medical records. I didn't say it out loud, but as soon as I found out what I had I knew at some point in the future I wanted to get more involved. Maybe I could give back to my parents that way. In the late winter, early spring of 2008 I started talking to Katie Pennycate a Moebius Mom who had recently lost her daughter to complication from Moebius. Shortly after we met in person at her daughter Hannah's gravesite. As I was kneeling down in front of it. I asked God why I was spared, and Hannah wasn't? The Doctors told my parents many times that I would not live to see puberty. It was then that I understood what I wanted to do to make a difference.  (The photos of that first visit were lost. The photos below were taken in 2010)

That event and everything to follow were the building blocks for us creating the global online Moebius Syndrome Community, the Many Faces of Moebius Syndrome, and Moebius Syndrome Awareness Day. It wasn't something I did alone. It was something our entire community did together as we grew, and I thank each and every one of you for it.

-Tim Smith

Virginia Moebius Meetup 2010

In the spring of 2010 Tim Smith and Sharon Deveney hosted the 1st Virginia Moebius Meetup. The three people attending who had Moebius Syndrome were Tim Smith, Lauren Deveney, and Jayden. Zummo.

Website Beginnings

Social Media and Facebook

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In the early days of Facebook, the only organized Moebius Syndrome group on Facebook was a UK group that Russell Briggs started. In October of 2010. A Moebius Mom from Canada decided she wanted to start a group so she could chat with her Moebius friends. As soon as she created the public group people started joining. It was a little bit more than what she bargained for, so the admin duties were turned over to the Tim Smith and the Many Faces of Moebius Syndrome. Tim thought the group should belong to everyone, so he invited the MSF to share admin duties with him. Since it was a public group, and anyone could see the content they decided to create a private group. Tim created Moebius Friends 2 now called Moebius Friends support network. Both groups are still going strong. 

Moebius Syndrome Awareness Day 2011 - 2024

Moebius Syndrome Awareness Day was founded by the MFOMS is 2011.

To learn more, click here!

(Click on image to view gallery.)

MSAD 2012

MSAD 2013

MSAD 2015

MSAD 2017

MSAD 2019

MSAD 2020

MSAD 2021

MSAD 2022

MSAD 2023

MSAD 2024

MSAD 2011

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