Celebrating Moebius Syndrome Awareness Day
Moebius Syndrome Awareness Day, founded by the Many Faces of Moebius Syndrome, is held annually to spread awareness of this extremely rare condition. “It is a tribute to the many families around the world who are often the unsung heroes of our lives,” says Tim Smith, president of the Many Faces of Moebius Syndrome, who himself has the condition.
Moebius Syndrome Awareness Day is celebrated around the globe every year on January 24th, marking the birth date of neurologist Paul Julius Moebius who was the first to diagnose the condition in 1888.
What is Moebius syndrome?
Paul Julius Moebius first identified the syndrome as "nuclear atrophy." As well as being called Moebius Syndrome, the condition is now also known as congenital facial diplegia syndrome congenital oculofacial paralysis, MBS, and Moebius sequence. The condition is a congenital facial paralysis of the 6th and 7th cranial nerves, which control eye movement and facial expression. Less often, other cranial nerves, including the 5th, 8th, 9th, 10th, 11th, and 12th may be affected.
Moebius Syndrome usually affects both sides of the face and can affect the ability to make facial expressions such as smiling, frowning, raising eyebrows, puckering lips and closing eyes. Most notably, Moebius Syndrome affects speech and the inability to move the eyes from side to side.
The cause(s) of Moebius syndrome have not yet been identified, but some studies have suggested a combination of genetic and environmental risk factors. Most people with Moebius Syndrome are born with complete facial paralysis and can’t close their eyes or show facial expressions. People with Moebius Syndrome can also experience respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength.
It is estimated that there are only between 10,000 to 25,000 cases of Moebius syndrome worldwide. In past year’s Moebius Syndrome Awareness Day has been a resounding success and saw participation from every continent on the planet – the main-focus is to create awareness.
“There is no substitute for a loving, supportive family whether that family is biological, or our worldwide Moebius Family. Knowing someone is there to support and fight for you when the going gets tough makes living with Moebius Syndrome a little easier”
– Vicki McCarrell, former President of the Moebius Syndrome Foundation
- For more information about moebius syndrome or to get involved, try these resources: The Many Faces Of Moebius Syndrome www.mfoms.org
- The Moebius Syndrome Foundation www.moebiussyndrome.org
- The Moebius Syndrome Research Trust www.moebiusresearchtrust.org
- The Children’s Craniofacial Association www.ccakids.com
- Face Equality International www.faceequalityinternational.org
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