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In 2024–2025, we listened to 40 siblings from across Australia share their experiences of family life and social connection. Most had a brother or sister with developmental disability, and others did not. Together, they offered open and thoughtful reflections on roles and responsibilities at home, friendships, fam
Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763
Helen Jenny Leonard Downs MBChB MPH BApplSci (physio) MSc PhD Principal Research Fellow Head, Child Disability +61 419 956 946 08 6319 1763
As Neurodiversity Celebration Week draws to a close, we are shining a light on an important study underway at The Kids Research Institute Australia, led by Dr Thom Nevill, a Research Officer within our Human Development and Community Wellbeing and Child Disability teams.
The Kids researchers are investigating the physical and psychological impacts of powered standing wheelchairs for boys suffering from Duchenne
Graham Jenny Peter Hall Downs Jacoby BAppSci PhD CRFS FANZSRS FThorSoc FERS BApplSci (physio) MSc PhD BA (Hons) MSc Honorary Research Associate Head,
This study investigated the dental attendance patterns of Australian children with and without disabilities using data from Growing up in Australia: The Longitudinal Study of Australian Children.
CDKL5 deficiency disorder (CDD) was first identified as a cause of human disease in 2004. Although initially considered a variant of Rett syndrome, CDD is now recognised as an independent disorder and classified as a developmental epileptic encephalopathy.
Since the discovery of MECP2 duplication syndrome (MDS) in 1999, efforts to characterise this disorder have been limited by a lack of large datasets, with small case series often favouring the reporting of certain conditions over others. This study is the largest to date, featuring 134 males and 20 females, ascertained from the international MECP2 Duplication Database (MDBase).