Formed in Melbourne in July 1989, the Rett Syndrome Association of Australia Inc. (RSAA) is a not-for-profit organisation which is managed by a Committee of volunteers, most of whom are parents of Rett syndrome children. The Association seeks to enhance the quality of life for persons with the syndrome and their families, and be of assistance to anyone interested in the disorder. July 2020 will mark the 31st anniversary of the Association.

Current members of the RSAA Committee elected at the Annual General Meeting on 25 October 2020 are as follows:

Executive:

President          

Claude Buda (NSW)

Claude Buda, father of Annelise who has Rett syndrome, was elected to the position of President of the Rett Syndrome Association of Australia (RSAA) at the 2018 annual general meeting held in Melbourne. Claude lives in Sydney

Vice-President 

Bill Callaghan, OAM. (VIC)

Bill Callaghan was President of RSAA from its formation in 1989 until 2018 and lives in Geelong, Victoria. His daughter, Joanne, who was diagnosed with Rett syndrome in 1986, passed away in 2004, 11 days short of her 33rd birthday. Bill was awarded the Medal of the Order of Australia in the Queen’s Birthday Honours announced by the Commonwealth Government of Australia in June 2012 for “Service to community health through the Rett Syndrome Association of Australia”.

Secretary

Dagmar Lockwood (SA) 

Dagmar Lockwood joined RSAA in  2017 and lives in Adelaide, South Australia with her husband and 2 children. Her daughter Madeleine was diagnosed with Rett syndrome in 2012 and is 20 years old. Dagmar works as a hospital coordinator at Flinders Medical Centre and in her spare time is a Lieutenant in the Navy Reserves.

Treasurer          

Tony Cagliuso (SA)

Tony Cagliuso is the Treasurer of RSAA and has a daughter Raquelle with Rett Syndrome. Raquelle turned 27 years of age in 2020 and the family were advised of her diagnosis of Rett Syndrome just before Raquelle’s 8th birthday, a time in which Rett Syndrome was still relatively unknown. Tony has been on the committee for many years now, initially as a State Representative, and for the past 3 years as the RSAA Treasurer. Tony is self-employed, owning and operating a plastics manufacturing business, and in his spare time he enjoys spending time with his daughter, family and friends, and the occasional round of golf.

Family Support Co-ordinator   

Sue Hallenstein (VIC)

Sue Hallenstein joined RSAA in 1989 and lives in Melbourne, Vic. Her daughter May was provisionally diagnosed with Rett Syndrome around 1986.  May passed away in 2016 aged 33 years. She has been on the RSAA committee for many years and supports the Rett Syndrome community in her role as RSAA Family Support Coordinator.

Other members:

Jayne Bowden (TAS)    

Elizabeth Davies (VIC)

Caroline Fitzpatrick (WA) .

Eric Gowans (SA)

Olivia Gowans (SA)

Gary Grocott (NSW)

Kristy Klingner (SA)   

Mary-Anne Rome (VIC)

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