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Many Faces of Moebius Syndrome
The mission of Many Faces of Moebius Syndrome (MFOMS) is to raise awareness of Moebius syndrome, connect individuals and families around the world, and provide accessible information, educational resources, and opportunities for people to share their stories. Founded in 2009, MFOMS is an all-volunteer nonprofit organization dedicated to building a stronger, more informed, and connected global Moebius syndrome community.
I was born with Moebius syndrome, a rare neurological condition that affects facial movement and other functions. In 2009, I founded Many Faces of Moebius Syndrome because I believed people with this condition and their families deserved a place to connect, share experiences, and find reliable information.
What began as a small effort has grown into a worldwide community. Today, MFOMS remains an all-volunteer organization dedicated to raising awareness, providing educational resources, and bringing people together.
After more than 17 years, my commitment remains the same: making sure every person affected by Moebius syndrome knows there is a community they can turn to.
Programs
Moebius Syndrome Education & Resources
MFOMS provides free educational resources for individuals and families affected by Moebius syndrome. Our programs include educational guides, medical resource directories, information for new parents, and school resources. We believe reliable information should be accessible to everyone, regardless of where they live or their financial circumstances.
Moebius Voices & Global Community
Through Moebius Voices, personal stories, interviews, and online community programs, MFOMS connects people with Moebius syndrome and their families worldwide. We provide opportunities for individuals to share their experiences, learn from one another, and build meaningful connections across borders.
Volunteering + Events
Virginia Moebius Syndrome Meetup
The Virginia Moebius Syndrome Meetup brought together individuals with Moebius syndrome, their families, and friends for an opportunity to meet in person, share experiences, and build friendships. These gatherings help strengthen the connections that make our community so special.
Grand Haven, Michigan Moebius Syndrome Meetup
Our Grand Haven, Michigan meetup brought members of the Moebius syndrome community together for a day of friendship, conversation, and connection. Events like these provide opportunities for individuals and families to meet others who understand their experiences and build relationships that extend beyond the gathering itself.