I am a Cognitive Neuroscientist with extensive clinical, research and academic experience. For over two decades I have coordinated the clinical care of individuals with Friedreich ataxia (FRDA) in conjunction with the FRDA Clinical Research Program (FRDA CRP) at the Murdoch Children’s Research Institute. Under my collaborative leadership the FRDA CRP has focused on understanding the phenotypic profile of inherited ataxias including FRDA, interventions that improve function for individuals with rare inherited ataxia, participating as a clinical site in natural history and pharmaceutical trials and preparing for gene therapy trials. In addition, I have evaluated existing and novel clinical outcome measures including in collaboration with Deakin University, developing instrumented measures of ataxia that represent ecologically valid activities meaningful to individuals with rare, inherited ataxias such as FRDA and Dentatorubral-pallidoluysian atrophy (DRPLA); and, are relevant at all stages of the disease trajectory. These devices (Ataxia Instrumented Measures) and their associated algorithms have undergone clinical validation, patenting and are built to regulatory standards which will enable their use in clinical trials.

I have also led the production of Clinical Management Guidelines for FRDA on two occasions. I am a founding member of the of the Australian FRDA Stem Cell and Gene Therapy Consortium, member of the international Scientific Steering Committee for the Friedreich Ataxia Global Clinical Consortium (FA-GCC), co-investigator in the international UNIFAI FRDA natural history study and contribute to working groups facilitated by the Friedreich Ataxia Research Alliance (FARA). I regularly present at both the national and international level.