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ActiveRett was developed as part of a grant awarded to Telethon Kids Institute by the International Rett Syndrome Foundation to increase physical activity in Rett syndrome.




You can get in contact with the Rett team by emailing Jenny at

We would like to acknowledge the contributions of Anisha Chowdhury and Christopher Dougherty in the creation of the ActiveRett material.

ActiveRett could not have been made possible if it weren't for the insights, trust, and collaboration with our co-design team. We'd like to acknowledge and deeply thank them for their contributions and ongoing support, with special mention to GeoffMarkMandyKerrieJane, and Claude.


Kerrie and Cheyenne Carmichael

Kerrie and Cheyenne Carmichael, Victoria

Claude and Annelise Buda

Claude and Annelise Buda, New South Wales

Jane and Leana Eikelboom

Jane and Leana Eikelboom, Western Australia

Mark and Jess Ward

Mark and Jess Ward, New South Wales

Mandy and Sarah Gale

Mandy and Sarah Gale, Tasmania

Geoff and Morgan Wishart

Geoff and Morgan Wishart, Western Australia

Portrait of Jenny Downs

Jenny Downs

Program Head, Development and Disability

Telethon Kids Institute, Australia

michelle stahlhut.jpg

Michelle Stahlhut


Center for Clinical Research and Prevention, Denmark

Portrait of Marie Blackmore

Marie Blackmore

Senior Research Officer

Telethon Kids Institute, Australia

Portrait of Helen Leonard

Helen Leonard

Principal Research Fellow

Telethon Kids Institute, Australia

Portrait of Meir Lotan

Meir Lotan

Senior Lecturer, Physical Therapy Department

Ariel University, Israel

Portrait of Cochavit Elefant

Cochavit Elefant

Head of Music Theraphy program

University of Haifa, Israel

Telethon Kids Institute