About the Many Faces of Moebius Syndrome (MFOMS)

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Founded in 2009, the Many Faces of Moebius Syndrome (MFOMS) is the world’s largest all-volunteer Moebius syndrome organization. Before social media became widespread, we pioneered the use of the internet to connect individuals and families affected by Moebius syndrome—bringing the global community together, one family at a time.

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In that same year, we began collecting personal stories from people around the world, building a library of lived experiences to foster understanding and connection.

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On January 24, 2011, MFOMS established Moebius Syndrome Awareness Day (MSAD), which has since grown into a Global Day of Recognition and celebration, observed annually on January 24.

 

Our Early Years

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From 2009 through most of 2019, MFOMS operated without nonprofit status. We were simply a group of passionate, dedicated individuals proving that great achievements do not always require significant funding—just determination, vision, and hard work. During this time, we:

• Founded Moebius Syndrome Awareness Day

• Built a global Moebius syndrome community

• Organized events and outreach efforts

• Created impactful resources and connections

 

To learn more, visit our Accomplishments & Milestones pages.

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Our early success would not have been possible without the dedication of our founder Tim Smith, along with Donnie Downs, Gavin Fouche, and Rebecca Maher. Their leadership, commitment, and perseverance laid the foundation for everything MFOMS has achieved.

 

Our Nonprofit Years

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From late 2019 to early 2024, MFOMS operated as a nonprofit organization. We provided Christmas presents for families in need. We provided welcome packets for new parents. We supplied medical necessities to families around the world such as eyeglasses and wheelchairs. We sponsored virtual and in person events like Camp Moebius.

 

In early 2024, the nonprofit entity was dissolved, and all remaining funds were donated to the Moebius Syndrome Foundation. We have since returned to our roots which brought us global acclaim - focusing on what we have always done best: building connections, sharing stories, and fostering a strong global community.

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Our Mission

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Our mission is simple but powerful: to create a better tomorrow for ourselves and our children living with Moebius syndrome.
We believe that every person deserves the opportunity to live their best life. We are committed to making that a reality by:

• Raising awareness

• Providing resources and information

• Offering support to individuals and families

• Strengthening the global Moebius syndrome community

 

An open letter to the Moebius Community by Tim Smith

 

Since 2009, Many Faces of Moebius Syndrome has been about one thing: bringing people together. Today, as an all-volunteer organization, we’re stronger than ever — and I’d like to share where we are now, what’s ahead, and how you can be part of it.

👉 Read the full letter by clicking here.

 

How You Can Help

 

You can support MFOMS by:

• Visiting and following our social media pages

• Sharing our posts to raise awareness

• Telling your friends and family about our work and encouraging them to do the same

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​​​​Together, we can continue to build a stronger, more connected future for everyone affected by Moebius syndrome.