History of Moebius Syndrome Awareness Day

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The idea for a worldwide Moebius Syndrome Awareness Day—a day when people everywhere wear purple and help spread awareness—was born from the Many Faces of Moebius Syndrome (MFOMS) organization. At the time, MFOMS was led by Tim Smith from Virginia, USA, and Gavin Fouché from Cape Town, South Africa—both of whom have Moebius syndrome.

Though Smith and Fouché have never met in person, their shared passion for education and advocacy united them across continents. Using social media platforms like Skype, Twitter, and Facebook, they organized and planned the first-ever Awareness Day, determined to create a positive impact for those living with the condition.

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How It All Began

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The initial idea came from Donnie Downs, a father of a child with Moebius syndrome, who pitched it to Smith. Together, they launched an online cause page to see if the global Moebius community wanted its own awareness day. The response was immediate—over 200 people joined within the first week.

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     “We knew we had a hit on our hands,” recalls Smith. “But we also knew we faced an uphill challenge since we didn’t have       the funds to promote it.”

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In late 2010, they created a video to rally support, and by the first Moebius Syndrome Awareness Day in 2011, more than 6,000 people had joined the cause.

 

Going Global

 

The inaugural event made international headlines when an Australian TV network aired a story about Jack Lawrance, a young boy with Moebius syndrome. That story was picked up by U.S. and global media, leading to an unprecedented surge in visitors to the MFOMS website—tens of thousands within the first 24 hours.

 

     “It was surreal to see words I had written appear in an American newspaper on the other side of the world,” says Fouché.

 

Changing Perceptions

 

Today, Moebius Syndrome Awareness Day is used by both children and adults to educate teachers, classmates, friends, and colleagues. What once was a day shadowed by feelings of isolation has become a celebration of self-pride, acceptance, and community.

     “We want to take Moebius syndrome out of the Dark Ages,” says Fouché. “Despite our differences, we are just as normal         as anyone else.”

 

Ongoing Efforts

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In the month of January MFOMS hosts an annual Moebius Syndrome Holiday Heroes Campaign, highlighting inspiring individuals living with Moebius syndrome.

 

Participation in MSAD is simple people can hand out flyers, wear purple, or engage in any activity that sparks conversation and awareness. Want to get involved? Email tim@mfoms.org.

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     “Moebius Syndrome Awareness Day has become more successful than I ever dreamed,” says Smith. “It spread like                   wildfire across the globe. Each year, it grows bigger, with more and more people joining in.”

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