Welcome to the Moebius Syndrome Foundation! Our stories are probably very similar to yours. 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.
In the early 1990's some adults with Moebius Syndrome and parents of children with Moebius syndrome, decided to come together to provide information and networking for other people affected by Moebius syndrome, and a wonderful thing happened - people started networking. The Moebius Syndrome Foundation was formed in 1994, the same year that we held our first conference in Los Angeles.
Since that time we've grown from a group with less than 10 individuals with Moebius syndrome, to over 2,000 worldwide thanks to the internet, newspaper and magazine articles, TV shows, and craniofacial support groups which refer people to us. We hold conferences every two years in a major city in the U.S., and we've produced an educational DVD about Moebius syndrome with funding from the Christopher Reeve Foundation which is provided free of charge to anyone with Moebius syndrome.
For over 14 years we've produced newsletters, sent at no charge to people with Moebius syndrome and their families, physicians, therapists, educators and others interested in this unique neurological condition. It is exciting to see people connecting, sharing their stories and helping each other.
You've found a home and friends. Please email/phone/write to us and we'll send you a packet of information about Moebius syndrome and we will help you connect with other people who have Moebius in your state/country. We never tire of hearing from adults who have just found out about the Foundation or from the parents of newly diagnosed babies, toddlers and children.
For parents of new babies with Moebius syndrome, we will send you a t-shirt or bib for your new baby which says, 'Ask My Mom About Moebius Syndrome.'
We look forward to hearing from you and meeting you at our 10th Moebius Syndrome Foundation Conference in Philadelphia, Pennsylvania Friday July 13 - Sunday July 15, 2012. Contact us for more information or to be added to our mailing list.
Moebius Syndrome Foundation
PO Box 147
Pilot Grove, MO 65276