More than twenty years ago, the organization’s founders, Vicki McCarrell and Lori Thomas, were on the hunt for answers. They each had a child with Moebius syndrome but couldn’t find any information or support. After they met each other, they began sending out newsletters and held what would become the first annual Moebius Syndrome Foundation Conference in 1994. The Moebius Syndrome Foundation was born.

The Moebius Syndrome Foundation is the home for the Moebius community™. We offer resources, ways to connect with other families and individuals living with Moebius, events, volunteer opportunities, education and updates on scientific advances. You can always call with questions or if you just want to talk with someone.

All new members receive a Welcome Packet.  Infants and toddlers with Moebius syndrome will receive a bib or t-shirt.

The Moebius Syndrome Foundation looks forward to supporting you along your journey. Welcome home!