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Moebius Syndrome is

Moebius syndrome is a rare neurological condition resulting in facial paralysis that may include respiratory, eye, limb, speech, hearing and other disorders.

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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 Möbius, 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 (do visit and join) 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; Visit their Website
The Many Faces Of Moebius Syndrome; Visit their Website
The Moebius Syndrome Research Trust; Visit their Website

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.

Gavin Fouche

Feedback of the day - see the video and attached PDF file:

24012011.pdf2.39 MB
Möbius syndrome From Wikipedia, the free encyclopedia Möbius syndrome (also spelled Moebius) 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 Möbius syndrome are born with complete facial paralysis and cannot close their eyes or form facial expressions. Limb and chest wall abnormalities sometimes occur with the syndrome. Most people with Möbius syndrome have normal intelligence, although their lack of facial expression is sometimes incorrectly taken to be due to dullness or unfriendliness. It is named for Paul Julius Möbius, a neurologist who first described the syndrome in 1888.[1]

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Letter to the Teacher

Dear Teacher:

I'm giving you this because I want you to understand more about me. You'll see I am just like everybody else in your class in lots of ways, but in some ways, I'm not the same. I need you to know how I am “different” from the other kids in our class so you can help make school a safe place for me.

I have Moebius Syndrome, which means that I have a paralyzed face. I was born with it. I can't smile, close my eyes completely, blink, frown or show any facial expression. Believe me. I would have much rather been born with something else because it really hurts at times to have this! Maybe the hardest part about Moebius is that it is so rare and hard for others people to understand. Who ever thought that somebody could never smile?

Moebius syndrome is a rare neurological condition resulting in facial paralysis that may include respiratory, eye, limb, speech, hearing and other disorders.

For International Moebius Syndrome related websites of foundations, information and support groups, visit the Moebius Website.

Knowledge is power. Being part of groups open doors too support and information.

You will find an interactive map with links to many International Moebius Syndrome Related Organisations.


Connecting Moebius Syndrome Patients Globally.

A partnership project of EURORDIS and NORD, RareConnect provides a platform for patients, families, and patient organisations to develop online communities across continents and languages. Translation of stories, blog, and forum posts are completed by human translators. Patients can therefore have conversations with others in languages they do not even speak themselves.

Visit the Moebuis Syndrome Community today and join the global conversation.

Smile for ME

Smile for me (16 page booklet). A story written for primary school aged children, to help them understand the condition called Moebius Syndrome. Children with Moebius Syndrome don’t have the ability to show facial expression, such as smiling, anger, and sadness. They have a mask-like facial expression, and communication with other children is difficult. This is a story to help explain why children with Moebius Syndome smile from the inside.

The official website of the Moebius Syndrome Foundation-Africa

This is the official website of the Moebius Syndrome Foundation-Africa (MSFA), a NPO organization. Donations are used to achieve the goals of the Moebius Syndrome Foundation-Africa (MSFA) and are not for personal use. The Moebius Syndrome Foundation-Africa (MSFA) and its Board does not diagnose Moebius Syndrome/ Sequence in individuals nor does it endorse particular medical professionals/treatments/organisations. However, with the consent of an individual, we could put him/her in contact with a Medical Professional(s) for correct medical evaluation.