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. It is our hope that you find all the support you need.

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.

Benefits of joining

We know you have questions. And we may not have all the answers, but we will point you in the right direction and help you in any way that we can. As you go through our Website, you will find many resources. Read our extensive bi-annual newsletter. Join some of our online communities or participate in local events. The most important benefit of joining the Moebius Syndrome Foundation is the community or family that will support you. You can always call with questions or if you just want to talk with someone.

Infants and toddlers with Moebius syndrome will receive a t-shirt when their parents fill out the form below –>

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