24 Jan 2011

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.