wear purple on Jan 24th!!! please!

A little more information about Moebius Syndrome!

http://www.manyfacesofmoebiussyndrome.com/home

Dear Friends
On the 24th of January 2011 , the first ever Moebius Syndrome Awareness Day will take place and will be celebrated worldwide by the various Moebius Syndrome communities and organizations.
January 24th is a significant date in the history of Moebius Syndrome as it is the birth date of Professor Paul Julius Mobius, the neurologist who first diagnosed the disorder in 1888, and who was born on January 24th, 1853.

The concept of the Moebius Syndrome Awareness Day was conceived by Donnie Downs, a board member of The Many Faces Of Moebius Syndrome website, whose son Caleb was born with the syndrome.

During the course of 2010 a cause page was started at www.causes.com/causes/453553 in support of a Moebius Syndrome Awareness day – to date it has attracted 4343 members, all in support of Moebius Syndrome awareness.

The first ever Moebius Syndrome Awareness Day in 2011 will be supported by all three of the Moebius Syndrome organizations;

The Moebius Syndrome Foundation  www.moebiussyndrome.com

The Many Faces Of Moebius Syndrome www.manyfacesofmoebiussyndrome.com

The Moebius Syndrome Research Trust www.moebiusresearchtrust.org

Those of us who have Moebius Syndrome or who are a parent, relative or friend of someone who has Moebius, are all too aware of the lack of resources, understanding and knowledge of it – even sometimes from seasoned medical practitioners and other learned professionals.

The aim of a Moebius Syndrome Awareness Day is, of course, to create an awareness of the syndrome; to break the social barriers which can be created by it; to foster a greater understanding of it by the medical community and public at large; and to literally bring the syndrome and the perceptions of it, and those who have it, out of the dark ages, where it has been languishing for far too long.

The true experts on Moebius Syndrome are you - the parents, siblings and individuals who live with it every day of your lives. Please join us in celebrating the first ever Moebius Syndrome Day on January 24th. Together we can improve the lives of those affected by it, and those who have yet to be affected by it.

                       By Gavin Fouche

Mission Statement
To create a better tomorrow for ourselves and our children through education and public awareness!
What is Moebius Syndrome?
Moebius Syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius syndrome are born with facial paralysis, which means they cannot close their eyes or form facial expressions. Limb and chest wall abnormalities sometimes occur with the syndrome. Most people with Moebius syndrome have normal intelligence, and others should take care not to confuse their lack of facial expression with dullness or unfriendliness. It is named for Paul Jullius Mobius, a neurologist who first described the syndrome in 1888.

A little more information about Moebius Syndrome!

CLINICAL FEATURES
Moebius syndrome results from the underdevelopment of the sixth and seventh cranial nerve.  The sixth cranial nerve controls lateral eye movement, and the seventh cranial nerve controls facial expression. People with Möbius syndrome are born with facial paralysis and the inability to move their eyes laterally. Often, the upper lip is retracted due to muscle shrinkage.  Occasionally, the cranial nerves five and eight are affected. If cranial eight is affected, the person experiences hearing loss.
It is estimated that there are, on average, 2 to 20 cases of Moebius syndrome per million births. Although its rarity often leads to late diagnosis, infants with this disorder can be identified at birth by a "mask-like" lack of expression that is detectable during crying or laughing and by an inability to suck while nursing because of paresis (palsy) of the sixth and seventh cranial nerves. Also, because a person with Moebius syndrome cannot follow objects by moving their eyes from side to side, they turn their head instead.
Other symptoms that sometimes occur with Moebius syndrome are:

• Limb abnormalities—clubbed feet, missing fingers or toes
• Chest-wall abnormalities 
• Crossed eyes
• Difficulty in breathing and/or in swallowing
• Corneal erosion resulting from difficulty in blinking

Children with Moebius syndrome may have delayed speech because of paralysis of the lips. However, with speech therapy, most people with Moebius syndrome can develop understandable speech. Möbius syndrome has been linked to increased occurrence of the symptoms of autism.  However, some children with Moebius syndrome are mistakenly labeled as mentally retarded or autistic because of their expressionless faces, and frequent drooling.

 Treatment
There is no single course of medical treatment or cure for Moebius syndrome. Treatment is supportive and in accordance with symptoms. If they have difficulty nursing, infants may require feeding tubes or special bottles to maintain sufficient nutrition. Physical, occupational, and speech therapy can improve motor skills and coordination and can lead to better control of speaking and eating abilities. Often, frequent lubrication with eye drops is sufficient to combat dry eye that results from impaired blinking. Surgery can correct crossed eyes, protect the cornea, and improve limb and jaw deformities. Sometimes called "smile surgery" by the media, muscle transfers grafted from the thigh to the corners of the mouth can be performed to provide the ability to smile. Although "smile surgery" may provide the ability to smile, the procedure is complex and can take twelve hours for each side of the face. Also, the surgery cannot be considered a "cure" for Moebius syndrome, because it does not improve the ability to form other facial expressions.

Living with Moebius Syndrome
Many people with Moebius syndrome lead full lives and experience personal and professional success. Facial expression is important in social interaction, and other people may have difficulty recognizing the emotions of people with Moebius. A person with Moebius syndrome who cannot smile may appear unfriendly or disinterested in a conversation. However, friends and family who are familiar with the person with Moebius syndrome learn to recognize other signals of emotion such as body language, and they sometimes report forgetting that the person has facial paralysis altogether. People with Moebius syndrome can use alternative methods to communicate emotion—such as body language, posture, and vocal tone.

From what I have read, and please do not quote me on this - there are only less then 1000 people affected by Moebius in the United States. In Europe there are only 300 cases a year. this is a very rare disorder and could use the publicity. We all know that publicity equals money for research in the long run. So please, please, please be supportive of raising awareness of Moebius syndrome by wearing purple on Jan 24th.

thank you!