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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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On 24 January 2012 we celebrate our 2nd Annual Moebius Syndrome Awareness Day.


What meaning does Moebius Syndrome Awareness Day have for me

24 January is not only the birthdate of Paul Jullius Mobius, but it also gives rise to the annual celebration of an Awareness Day for children / adults suffering from Moebius Syndrome. This was the day our lives were put on course – part of the same journey, with Paul Mobius as the Pilot, we the passengers. The realisation that word around Moebius Syndrome has spread brings a smile upon my face. Somewhat 16 years ago, and longer, this was a much feared disorder. The diagnoses were dreadful, parents were sent home without any hope, advice or information. Within the medical fraternity you were told to institusionalise the child – not to love him/her – don’t get any hopes – it’s only voluntary reflexes - he will be blind or will not even be able to be fed. He is not educable – he will be a complete vegetable. Who could survive against these odds?

What was left for parents to hold onto but Prayer, love and a Godly miracle! With the help of family, friends, and groups connected to the family, you can now raise the awareness around Moebius Syndrome. Put your talents, your compassion, your knowledge, and your experience out there in a way that can benefit others. In hindsight, any challenge or disability to me means loving that person unconditionally, so let us step up and spread the awareness.

Our appeal is simple – in support of those living with Moebius Syndrome, wear purple on 24th January and share your knowledge about this disorder. Your contribution can make a difference. 24th January is now also a day of Celebration in the Life of those living with Moebius Syndrome. Thank you to all who have made this day possible and for giving our children a new meaning to life.

Much love
Kay

Last year people all around the world hosted events on Moebius Syndrome Awareness Day. Thousands of people spread the word by telling all of their friends and family. This year we hope people will do the same. Host events with your neighbors, churches, and schools. Ask your local media to run stories about MSAD 2012. But instead of having thousands of people spread the word about MSAD this year let's try to get tens of thousands of people to do it.

If your looking for some ideas for things to do on 24 January 2012 Moebius Syndrome Awareness Day check out what others did last year to get some ideas

Higlights 2011

Please join the Facebook Page to show that you are pledging!


Click here to join: I Pledge To Wear Purple ...


You can also download this graphic to add to your profile photo on the day of the 24 Jan 2012





July 24th 2011 is the halfway point between MSAD 2011 and MSAD 2012.
This is a video Tim Smith made. He talk a little about the past and a little about the future.
He did include subtitles for those who cant understand what he is saying.
We encourage you to take a look at this video. You'll find it interesting and informative.



Node Ref: 
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?

MoebiusConnect.com


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 connect.com 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.



RareConnect


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.