AUSTRALIAN KABUKI SYNDROME ASSOCIATION INC.

 

ASSOCIATION HISTORY
Established in 2006

 
   

HISTORY

The Australian Kabuki Syndrome Association Inc. was officially formed in September 2006, holding the inaugural Annual General Meeting in Geelong, Victoria, preceding the fourth National Family Day celebration.

Kerrin Windsor, mother of a daughter with the condition of Kabuki syndrome, organized the first National Family Day in Adelaide, South Australia in 2001.

This was the beginning of Australian families, meeting for the first time, forming friendships and supporting one another through their shared experiences. Two guest speakers from the Women’s and Children’s Hospital spoke to the occasion. From this small group of five families, the number of families attending the National Family Day has increased each year. At the third get-together in 2005, held in Sydney, New South Wales, three mothers decided there was a need for a formal organization to help support one another and to make an awareness of the little known condition, Kabuki syndrome. The organization would also focus on supporting a National Family Day.

One year later the Association was formed with a constitution and registered as an incorporated body. Within twelve months of the Association’s existence, word had spread of the benefits gained by families interacting at the National Family Days. This gave rise to fifteen persons with the condition of Kabuki syndrome, their families, friends and supporters attending the Association’s National Family Day in September 2007, at Varsity Lakes Queensland. This was approximately 50% of known persons diagnosed with the condition of Kabuki syndrome within Australia.

The original name of the Association was, Australian Kabuki Support Association Inc. but this resulted in a lot of explanation of what Kabuki meant. The word Support was deleted and replaced with the word Syndrome. This now describes who we are and promotes awareness of Kabuki syndrome.

For 2008 the Management Committee introduced a second day for an Education Forum. This was supported by professional bodies providing health, (physical and psychological), and children’s educational information.

This two day event was held at Collaroy Beach, New South Wales with all families residing at the same venue. This very successful weekend will set the focus for the following year.

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THE LOGO

Jos Vergouwen, a Dutch parent of a Kabuki syndrome child, designed the logo which is now used throughout the world to represent Kabuki syndrome. The character “K” represents the word Kabuki and illustrates two outstretched arms symbolic of the invitation to network with one another.

THE MOTTO

TO SUPPORT AND MAKE A DIFFERENCE

 

 

   

 

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AUSTRALIAN KABUKI SYNDROME ASSOCIATION INC.2008