Many Faces of Moebius Syndrome
In the Begining
The winter of 2008 was a season that changed everything for me. I had just gone through a painful breakup with the woman I thought I’d spend the rest of my life with. I packed my life into boxes, moved to a new city, and started over from scratch. But this time, I knew I wanted more than just a fresh start—I wanted my life to mean something. I wanted to make a difference.
I don’t know if I chose Moebius, or if Moebius chose me.
When I was a kid, my parents didn’t even know the name of my condition. There was no support, no online groups—just family love and determination. They gave everything they had to care for me. And when cancer came for them, they still put me first. Both of them were gone before I turned 16.
I always knew I wanted to give something back to them—to honor the love and sacrifices they made for me. I didn’t even learn I had Moebius syndrome until years later, when my ex discovered it buried in my old medical records. I didn’t say it out loud, but deep down I knew: one day, I would get involved. One day, I would make this diagnosis mean something.
In late winter of 2008, I began talking to Katie Pennycate, a Moebius mom who had just endured the unimaginable—the loss of her daughter Hannah to complications from Moebius. Soon after, we met in person at Hannah’s gravesite. I knelt in front of her stone, the cold air pressing in around me, and I asked God a question I still carry to this day: Why was I spared, and Hannah wasn’t?
Doctors had told my parents many times that I wouldn’t live to see puberty—yet here I was, decades later, kneeling in the snow. And in that moment, the answer became clear. I was spared because I had a purpose. I was meant to do something.
That moment was the spark. It became the foundation for what we would build together: the global online Moebius Syndrome Community, The Many Faces of Moebius Syndrome, and Moebius Syndrome Awareness Day
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I didn’t do this alone. This was all of us—every single person who joined, shared, and stood together. We built this community side by side, and I am forever grateful to each of you.
—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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Back in the early days of Facebook, there was just one organized Moebius Syndrome group—a UK-based community started by Russell Briggs. Then, in October 2010, a Moebius mom from Canada decided she wanted a space where she could chat and connect with her Moebius friends.
She created a public group… and it took off faster than she ever imagined. People from all over the world began joining, sharing their stories, and finding the connection they’d been searching for. The group quickly became more than she had bargained for, so she passed the admin role to Tim Smith and The Many Faces of Moebius Syndrome.
Tim believed the group should belong to everyone in the community. He invited the Moebius Syndrome Foundation to share admin duties, building it into a true, shared home for anyone affected by the condition.
Because the group was public—and anyone could see its content—they decided to create a private space where members could speak openly and safely. That’s when Tim launched Moebius Friends 2, now known as the Moebius Friends Support Network.
Today, both groups are still going strong—thriving communities where thousands of people share, learn, and remind each other that no one walks this journey alone.
Moebius Syndrome Awareness Day 2011 - 2024
Moebius Syndrome Awareness Day was founded by the MFOMS is 2011.
To learn more, click here!
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