Contact Us
To find out any more information about how you can be involved, don't hesitate to contact us.
Email: Helen.Leonard@telethonkids.org.au
Phone: +61 419 956 946 | +61 8 6319 1761
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Rett syndrome is a rare but serious neurological disorder that affects about 1 in 9,000 girls. Even more rarely, boys may be affected.
We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.
These resources include the best available evidence about the course of Rett syndrome and its management as well as practical information about family associations, specialist clinical centres and links to relevant websites.
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
Victoria
Julie Trigg
Western Australia
Sana'a Faydi
Teresa Pracilio
Queensland
Kelly Backhouse
Tracey Thomas
Emma Reilly
Australian Capital Territory
Mirella Sadkowsky
South Australia
Viv Cagliuso
Tasmania
Jayne Bowden
To find out any more information about how you can be involved, don't hesitate to contact us.
Email: Helen.Leonard@telethonkids.org.au
Phone: +61 419 956 946 | +61 8 6319 1761