Every three days an Australian child is born with childhood dementia, a rare genetic disease that describes over 100 different conditions.
In this panel session, you will hear from three experts across practice, research & advocacy who will share stories of how we can make a difference in the lives of children living with dementia and the families who support them.
Dr Ineka Whiteman is the Head of Research and Medical Affairs at BDSRA Australia, a not-for-profit organisation providing family support, education and research funding for Batten disease, one of the most common childhood dementias.
Megan Donnell is the founder and CEO of the Childhood Dementia Initiative. She is the mother of two children who have childhood dementia caused by Sanfilippo Syndrome.
Suzanne Nevin currently works as a researcher investigating the psychosocial impacts of paediatric neuro-genetic disease at the Sydney Children's Hospital, Randwick. She has a Bachelor of Psychology (Honours) and is currently undertaking her PhD with the Collaboration on Genetic Epilepsies and Neuorgenetics Sydney Children's Hospital Network (CoGENes) and the Behavioural Sciences Unit (BSU). Her PhD is focused on enhancing current understanding and identifying the key features of the psychosocial support needs of families affected with severe neuro-developmental epilepsies, as well as developing evidence-based resources to improve psychological outcomes.
Dr Mustafa Atee is a Research and Practice Lead (Team Leader) at The Dementia Centre/HammondCare. His PhD led to the development, validation, implementation and commercialisation of PainChek®, an artificial intelligence-powered pain assessment medical device for people living with dementia.