Gail Hilton International Congress on Neuronal Ceroid Lipofuscinoses 2025

Gail Hilton

Co-Founder & Director of Programs, Childhood Dementia Initiative ꘡ 2024 Churchill Fellow Gail holds a Master's degree in Development Studies and an undergraduate degree in Biology, bringing nearly 20 years of experience in the not-for-profit sector supporting communities with significant health and social needs. Following an extensive career in service delivery for children and young adults with cancer, she has dedicated the past six years to childhood dementia research and advocacy, emerging as a leading voice in this field. Guided by the lived experience of families, she serves as both a co-founder and the current Director of Programs at the Childhood Dementia Initiative in Australia. She combines strong leadership, advocacy, and project management skills in her work addressing this critical health priority. As a 2024 Churchill Fellow, Gail is conducting international research into innovative care models for families affected by childhood dementia. Gail has spearheaded strategic initiatives that transformed childhood dementia from a largely unrecognised issue to a national health priority, orchestrating comprehensive stakeholder engagement across research, clinical, and government sectors. As part of the Initiative's leadership team, she has commissioned and co-authored pivotal research that both defined the childhood dementia cohort and documented the lived experiences of affected families. This work has started to see shifts in policy change, for example the inclusion of children in the National Dementia Plan, and secured substantial federal investment across multiple government departments. Her efforts have contributed to growing government prioritisation of this issue, enhancing Australia's influence in addressing this rare disease group globally.