WHO WE ARE
HISTORY OF MOEBIUS SYNDROME AWARENESS DAY
The concept of a worldwide Moebius Syndrome Awareness Day in which people are encouraged to wear purple and spread awareness about the syndrome originated from the MFOMS (Many Faces of Moebius Syndrome), an organization run by Tim Smith from Virginia, USA, Gavin Fouche from Cape Town, South Africa. Smith and Fouche have Moebius syndrome. Most of their organization and preparation for the event is done through social media platforms such as Skype, Twitter and Facebook. Smith and Fouche have never physically met, but both share the same passion for spreading education and awareness about Moebius syndrome which will enable those affected by it to lead better lives, they believe.
The initial idea was pitched to Smith by Donnie Downs, a father of a son who is affected by Moebius syndrome. They started a cause page to see if the global Moebius syndrome community wanted their own awareness day. Over two hundred people joined the cause in it's first week. "We knew we had a hit on our hands," says Smith." But we also knew that we faced an uphill challenge in making it happen since we did not have any money to promote an awareness day." In the late winter of 2010 they created a video of the climb they were about to undertake. "It was very rewarding to see people sharing it." says Smith. By the start of MSAD 2011 six thousand people had joined the cause and said yes they wanted a Moebius Syndrome Awareness Day.
In December of 2010 after it was confirmed we were going ahead with MSAD 2011 Kelsey Ferrill from Calgary, Alberta started a Facebook event page called "I pledge to wear purple on January 24th Moebius Syndrome Awareness Day". 700 people took the pledge to wear purple. Kelsey chose purple because it was the color of the MSF. Awareness purple is very popular and over Fifty Awareness groups use it as their color. Kelsey did a tremendous job in getting people to wear purple. Click here to view the comments they left on her event page that first year. In the coming years Kelsey and others like, Fresh Printz Industries, Kevin Lockwood, and Gavin Fouche carried the torch forward and found new ways for people to show their purple support. (Click here to read the entire article.)