History

The CHARGE Association of Australasia had its beginnings in the late 1980’s when a group of parents with children diagnosed with CHARGE syndrome met informally at The Royal Institute for Deaf and Blind Children in Sydney.

After the first American CHARGE Conference in 1993 these parents decided to formalise the CHARGE Association as a registered charity, this happened in 1994.

Originally the directors were all Sydney based but as the Association grew directors came from many Australian states and after the 1998 CHARGE conference in Auckland, directors also came from New Zealand.

Since 1994 Australasian CHARGE conferences have been held every two years on the alternate year to the American conference.

In 2004 a Dutch geneticist discovered the gene which causes CHARGE. Research continues worldwide surrounding the syndrome.

The Australasian Association has developed some important resources. These include a book co-written by a mother of a child with CHARGE and a friend with literary credentials.  The book details the condition as seen through the eyes of a young person who has CHARGE. The story is paired with explanations of the various aspects of the syndrome, supported by illustrations and photos. The book has proved popular with sales in Australasia and overseas and recently has been translated into German for the European market.

A DVD has also been produced chronicling the development of ten young people who have CHARGE syndrome from 1993 to 2007.

The CHARGE Association receives no recurrent government funding and is reliant on donations and fund raising to maintain the provision of services to families and professionals

Key aims of the CHARGE Association are to provide biennial conferences and regular newsletters. Also to support families through the provision of up to date information, seminars, parent-to-parent contact and to assist in the costs of respite care.