✉️ An Open Letter to the Moebius Syndrome Community

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Dear Friends,

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Since 2009, Many Faces of Moebius Syndrome has been about one thing: bringing people together. What started as a simple idea — connecting families, friends, and individuals living with Moebius Syndrome — has grown into a powerful community that inspires, educates, and advocates around the world.

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I want to take a moment to thank each of you. Every milestone we’ve reached, every story we’ve told, and every awareness campaign we’ve launched has only been possible because of you — your voices, your participation, and your willingness to stand beside one another.

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Before I go any further, I’d like to answer a question I get asked often: How is my health? A couple of years ago, I struggled with serious blood pressure issues that led to other complications. Last year I changed cardiologists, and with better care, my blood pressure is now under control. My quadruple bypass from 2010 is working perfectly, and I feel good. Thank you for caring enough to ask — it means a lot.

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Today, MFOMS continues as an all-volunteer organization. That’s not a weakness — it’s our strength. We are proof that passion and purpose can create lasting impact without relying on big budgets or paid staff. Our influence has always come from the heart, and that’s something money can’t buy.

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From the very beginning, we used the internet and social media to connect families around the world who had never met before. We played a big role in helping shape the global Moebius Syndrome community. Together, we founded Moebius Syndrome Awareness Day. In 2015, 2016, and 2017, we hosted the largest non-conference Moebius gatherings to date. This was done with heart, and our volunteers have never been short on that.

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Looking ahead, there is so much to be excited about:

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• Moebius Syndrome Awareness Day 2026 marks the 15th anniversary of this global event, and we’re building momentum like never before. Soon, we’ll be sharing a step-by-step toolkit so community members everywhere can ask their local and state governments to write a proclamation declaring January 24, 2026, the official 15th Anniversary of Moebius Syndrome Awareness Day. Shortly after, we’ll release another toolkit to help anyone who wants to share their story with the media. Even small newspaper articles are indexed by Google, and when people search “Moebius Syndrome Awareness Day,” your story could make a global impact.

• Moebius Voices — through stories, interviews, and creative projects — continues to give our community the platform it deserves. Every voice matters, and together they create a chorus the world cannot ignore.

• The MFOMS Awareness Storefront makes it possible for anyone to show their support through shirts, stickers, and more, with all proceeds going directly to the Moebius Syndrome Foundation. Every purchase helps us spread awareness and helps the MSF continue the important work they’re doing.

 

These efforts are not just projects — they’re proof of what we can accomplish when we unite. And this is only the beginning. Our vision for the future is clear: to keep amplifying voices, to keep raising awareness, and to keep reminding the world that the Moebius Syndrome community is strong, vibrant, and unstoppable.

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We also want to work side by side with other Moebius all-volunteer groups and nonprofits. MFOMS is a community platform focused on awareness, connection, and storytelling. Nonprofits lead research, advocacy, and family support. These roles don’t overlap — they complement each other, showcasing the full spectrum of what the Moebius Syndrome community can accomplish when united.

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Lastly, I want to thank all of our volunteers — past and present. You have been the heart and soul of MFOMS. I’m especially thankful that Gavin and Sophie are back, and for the dedicated people behind the scenes who polish our messages and bring them to life. One of those voices you’ll be meeting very soon.

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I invite you to join us in this journey: request a proclamation, share your story, share our posts, support a campaign, or encourage a friend to learn about Moebius Syndrome. Every action — big or small — makes a difference.

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Thank you for standing with us, for believing in what we do, and for being the reason MFOMS continues to thrive. This is your community. These are your stories. Together, we are the Many Faces of Moebius Syndrome — the voices of the Moebius Syndrome community.

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With gratitude and hope,

Tim Smith
President
Many Faces of Moebius Syndrome