The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.
Welcome to the Moebius Syndrome Foundation. We are here to support you and your families. Some of you may just be embarking on your journey, while others have been living with Moebius for years. Either way, you have found your home.
History of Moebius syndrome
In the late 1880’s a German physician, Paul Julius Moebius, MD, described the rare neurological condition of a man who had no facial expression, could not blink his eyes and could not move his eyes laterally. For over 100 years relatively little was known about this condition which affects primarily the 6th and 7th cranial nerves, but can affect any of the 12 cranial nerves.
On Dr. Moebius’ birthday each year, the Moebius Syndrome Foundation celebrates Moebius Syndrome Awareness Day. Join us in 2020!
The Beginning of the Moebius Syndrome Foundation
Two women who lived in California, Vicki McCarrell (pictured below) and Lori Thomas (pictured above with her daughter, Chelsey), both have children with Moebius syndrome. In the early 1990s, there were few resources available and they struggled to find answers. Soon they discovered each other and as luck would have it, they lived less than 20 miles apart! Initial meetings were held in their living rooms and in 1994 the Moebius Syndrome Foundation was founded. That same year, the first Moebius Syndrome Foundation Conference was held in Los Angeles.
Since that time the foundation has grown from a handful of individuals and families living with Moebius syndrome to more than 2,000 worldwide. The foundation hosts conferences every two years and provides extensive support and resources for the Moebius community. It is our hope that families and individuals find the support they need. We offer networking opportunities, education, resources, updates on scientific advances and most importantly, a home.
We look forward to supporting you along your journey. Join us today »