Consumer Reference Group

The Australian Rett Syndrome Study continues to strive towards its aim of understanding the disability of Rett syndrome.


As part of this process, the team is supported by a Consumer Reference Group to ensure family representation and input into issues relating to the design, management and output of the study particularly relating to communication and feedback to families.


The group meets 4 times a year by teleconference and consists of families representing all States of Australia except the Northern Territory.

The Consumer Reference Group representatives are:

New South Wales
Jill Grey
Ann Papafotiou
Cathey Stanberg
Sylvana Ward
Martine Balkwell
Kath Farrell


Julie Trigg

Western Australia
Sana'a Faydi
Teresa Pracilio

Kelly Backhouse
Tracey Thomas
Emma Reilly

Australian Capital Territory
Mirella Sadkowsky

South Australia
Viv Cagliuso


Jayne Bowden