The mission of the many faces of moebius syndrome is to create a better tomorrow for ourselves and our children with Moebius Syndrome by educating the general public and spreading global moebius syndrome awareness.
About Us! (Short Version)
The MFOMS (many faces of moebius syndrome) was established in 2009 by Tim Smith an adult with Moebius Syndrome. The mission began during the summer of 2008 when Tim met Katie Pennycate a moebius mom who recently lost her daughter. As he knelt by young Hannah's grave he wondered why he had been spared and she hadn't. The doctors told his parents when he was an infant that there was no way he would survive. Tim knew he had to do something to make a difference. He had to do something to give his life and Hannah's death more meaning.
Tim and Katie decided they wanted to go on Oprah and tell their story. So they contacted other moebius syndrome families on myspace and asked them if they wanted to write stories about their experiences and join them. A friend of Tim's with moebius syndrome told him he should go on Facebook and try to bring people together because everyone was joining Facebook.
When he arrived on Facebook he found a few people he knew from myspace, but for the most part people with moebius syndrome weren't connected. On one lazy Sunday morning he decided to do a keyword search on Facebook to see who else he could find with moebius syndrome. To his surprise he found about 50 families. None of whom knew each other. Tim, Katie Pennycate, Kari Storm, and others sent friend requests to everyone on the list and told them about what they were planning to do. Once the friend requests were accepted they put everyone they talked to in touch with others on Facebook. In a short span of time everyone else started doing the same and a chain reaction happened which caused the birth of the global moebius syndrome community on the internet. Tim had no idea of the impact of what they had done until the summer of 2010 when a moebius mom from New York state who was at the Moebius Syndrome Conference in Colorado texted him and said everyone is talking about you because you connected them online and now they are able to meet in person. She went on to tell him that a lot of people said they would not even have known about the conference if it hadn't been for his and others work in connecting them. At the time Tim was recovering from quadruple heart bypass surgery and was not able to go to the conference. The women's text brought a smile to his heart and it was at that moment that he realized he was a part of something very special.
In 2009 the moebius needs oprah campaign wasn't going very well. A lot of people were interested in doing it, but Oprah wasn't returning their emails. Then the other shoe fell when they found out that Oprah was going off the air.
They had collected 14 personal stories and wanted to find a good home for them. Each story came from the heart. One of the stories was written by a moebius mom whose husband was killed in combat overseas in the Middle East. None of the existing organizations wanted the stories unless they could be edited for content and size. That was something Tim refused to do.
A few weeks later Tim used the stories as a foundation to create the many faces of moebius syndrome website. www.manyfacesofmoebiussyndrome.com. In time 14 stories turned into what is today 170 + stories. Shortly after that a board of directors was formed and Tim was elected to be the President of the MFOMS. It was not a position he sought. He voted for Donnie Downs a moebius dad.
In 2010 - 2011 the MFOMS founded and organized the first moebius syndrome awareness day. Click here for more information.
In November of 2011 the MFOMS syndrome created the Moebius Syndrome Awareness Season which goes from November 1 to January 24 (MSAD) They kicked the season off with the launch of their 1st Annual Holiday Heroes campaign. During the season they also formed a coalition of over 60 groups from various walks of life to promote MSAD proving that they were committed to working with other organizations in promoting moebius syndrome awareness. The names of the groups in the coalition can be found at the end of that season's holiday hero video. Click Here!
In 2013 the MFOMS created their MFOMS Ambassador Program which has helped to spread awareness around the globe for the past few years.
The MFOMS are not a non profit. All money spent comes out of the pockets of various people within the organization. They do not except any donations. They do not spend any money to improve their rankings on website search engines or advertising. For the 2014 - 2015 Moebius Syndrome Awareness season they did take out a week long Facebook ad at the end of the season which promoted all of the moebius syndrome organizations. Everything else has been done by word of mouth and community related awareness projects.
In the winter of 2015 the MFOMS knew they needed to upgrade their website and resources before the start of the next awareness season. In the early fall they started construction on their new website at www.moebiussyndromeawareness.com and purchased 7 other website domains for future use. Six of them are forwarded to the new site. They will be building a moebius site for teens at www.moebiussyndrome.us soon.
The MFOMS is the only international moebius syndrome organization with Ambassadors around the globe. They have 10,000 plus followers on their Facebook page. They do not offer medical advice, do medical research or hold conferences. The MSF and MRT are experts at that. Because the moebius syndrome community is small compared to other communities like the Autism community the MFOMS believes that all of the moebius syndrome organizations should do different things but should work side by side at improving the lives of everyone in the global moebius syndrome community. The MFOMS sticks to doing what they do best which includes but not limited to:
- Pioneering new ways to educate and spread moebius syndrome awareness.
- MSAD event planning,
- Moebius Meet ups.
- Community building.
We hope you enjoy looking through this site and our birth site and that you leave us with a better understanding of moebius syndrome and our global moebius syndrome community. If you have any questions or suggestions please email us at firstname.lastname@example.org. One question we get asked the most is "Who are the MFOMS?" To answer that question all you have to do is look in the mirror because now that you know about us you are one of the MFOMS. We are all in this together. Thank You and God Bless.
- The MFOMS team -
MFOMS Board Members