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 on January 24.
The Beginning of the Moebius Syndrome Foundation
The Moebius Syndrome Foundation was founded in the 1990s by several parents of children with Moebius syndrome; adults with Moebius syndrome soon joined their efforts, and the organization evolved from a support group to a national nonprofit. The founders included Vicki McCarrell, Lori Thomas, Kathi Campbell, and Rich Campbell.
The first national conference took place in Los Angeles in 1994 and the 501 c 3 was granted later that year. The Scientific Advisory Board was created in 1998.
We look forward to supporting you along your journey. Join us today »