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.
Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally.
The first Moebius Syndrome Calendars are now available to purchase by mail. The 2009 calendar features photographs of children and adults with Moebius Syndrome taken by Rick Guidotti of Positive Exposure in New York. Print the Order Form to order calendars now.
New Oral Motor Research Study by Jennifer Gray of Aspen Editing & Consulting and Sara Rosenfeld-Johnson: Looking for Children 3 to 10 to participate in NJ, CA and CO. Call 720 514-9216 or email jennifer@aspenediting.com for more information.
On April 23 & 24, 2007 the Moebius Syndrome Foundation hosted the first Moebius Syndrome Scientific Conference which brought together 32 researchers and physicians from 9 countries. The conference was funded by a grant from four institutes of the NIH, the Friends of NIDCR, and the Moebius Syndrome Foundation. For two days the attendees presented their work on the genetics and treatment of the various aspects of Moebius Syndrome, followed by discussions and agreement to work together to unravel the mystery of the cause(s) of Moebius Syndrome.
