top of page


Thank you for visiting the new Many Faces of Moebius Syndrome website. We hope you’ll explore our websites and learn all about our amazing global community. Please feel free to email us at with any questions or suggestions.


If you would like to meet one of the Many Faces of Moebius Syndrome, go look in the mirror. Now that you have learned a little about us you are one of us. Welcome to our family and our community.

  • Facebook
  • Twitter
  • LinkedIn
  • Instagram

Our Story

Tim Smith

Gavin Fouche

Vice President

Sophie Rose
Council Member

Teri Brown Goodwin

Council Member

Founded in 2009, The Many Faces of Moebius Syndrome is the largest all volunteer Moebius Syndrome organization in the world. Prior to the popularity of social media, our founder Tim Smith, Gavin Fouche, Donnie Downs, and a few others pioneered the internet and brought the online global Moebius Syndrome community together one family at a time. 


In 2009 we started collecting personal stories from the global Moebius Syndrome community and now house the world's largest selection in our story archives.


On January 24, 2011, Many Faces of Moebius Syndrome founded Moebius Syndrome Awareness Day which has grown to become a Global Day of Celebration held on January 24th of each year.

From 2009 through most of 2019 the Many Faces of Moebius Syndrome was not a non-profit. We were a group of individuals who worked well together and proved that it doesn't take money to achieve great heights. Just determination and a lot of hard work. During that time period we founded MSAD, built the global moebius syndrome community, held events, and much more. To learn more, visit our Accomplishments & Milestones pages


From late 2019 to the beginning of 2024, we were a nonprofit and accomplished much. We hosted Riders for Moebius, and Camp Moebius. We provided Christmases for families in the global Moebius syndrome community in need. We supplied medical supplies for Moebius syndrome families. We sent out new parent welcome kits around the globe. In early 2024 the Many Faces of Moebius Syndrome board unanimously voted to dissolve the nonprofit and donate our proceeds to the Moebius Syndrome Foundation.


Dissolving the nonprofit didn't mean we are closing our doors. Just doing a little restructuring. Instead of having a Many Faces of Moebius Syndrome board of directors we have formed an all-Moebius Syndrome council to oversee the workings of the MFOMS. Tim Smith will be our council, President. A position he has held since the MFOMS was founded in 2009. Gavin Fouche who served as Vice President from 2011 through 2020 has returned to his old position. Welcome back Gavin. Sophie Jones who was part of the MFOMS in the early days is rejoining us to help with upcoming projects and more. Welcome back Sophie. Teri Brown Goodwin is joining us and will be overseeing our social media groups. Welcome on board Teri.


Our mission is to create a better tomorrow for ourselves and our children living with Moebius Syndrome. We believe everyone deserves the chance to live their best life, and we are committed to making that a reality for individuals and families affected by Moebius Syndrome by fostering a robust and supportive community. 

We cannot except donations of any kind, but if you would like to make a donation to Moebius Syndrome you can donate to the Moebius Syndrome Foundation by going to


We're always looking for new and exciting opportunities. Let's connect.

bottom of page