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 4742 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; and 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 Awareness 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.
An Australian television interview on "Mornings with Kerri-Anne" with Linda Lawrance and her son Jack. (Once you click on the page look to your right and scroll through the show titles click on the one which says "child smile"