Clinical Associate Professor Helen Leonard

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Dr Helen Leonard’s interest in disability research was sparked during her work as a clinician in the WA Disability Services Commission during the 1980’s and 1990’s. Despite the important work that she performed in the clinical care of children with a disability, the experience also left Helen feeling frustrated that there was little emphasis on looking at the causes of these conditions. Helen’s desire to identify the reasons behind why some children are affected by disability led her to enroll in a Masters of Public Health degree in 1993. Based at the Institute under the supervision of Professor Carol Bower, Helen chose to focus on a rare and complex disorder known as Rett syndrome, which affects one in 8,500 girls. As part of her Masters degree, Helen established the Australian Rett Syndrome Database that has become a vital resource in the research of this rare disorder and has led to important support networks being developed for the families of these children. Helen was also instrumental in the formation of the International Rett Syndrome Phenotype Database which contains data from children all over the globe and which has facilitated the discovery of various genetic abnormalities associated with the disorder. Helen’s vision and commitment to Rett syndrome research was recently recognised with her being awarded the 2008 ‘Circle of Angels Research Award’ by the International Rett Syndrome Foundation. Along with Rett syndrome, Helen is also involved in studies looking at other childhood disabilities including intellectual disability and autism. Her studies have explored factors outside genetics that may increase the risk of children becoming affected by disability, including social and demographic elements.