Our publications 

White paper

Our white paper, Childhood Dementia: the case for urgent action highlights the size, scale and wide-reaching impacts of childhood dementia.

Burden of disease study

The burden study prepared by THEMA Consulting, Childhood Dementia in Australia,  quantifies the burden of childhood dementia on patients, carers, the healthcare system and our society.


National Action Plan

The Childhood Dementia National Action Plan (July 2021) provides the Federal Government with a clear, actionable, and effective strategic framework to address childhood dementia in Australia. Children with dementia have been forgotten and left behind for too long. Implementation of this plan would make Australia a world leader in driving urgently needed solutions for these children and their families. 

Mitochondrial Donation Submission

Our submission to the Inquiry into the Mitochondrial Donation Law Reform (Maeve’s Law) Bill in July 2021. The Childhood Dementia Initiative welcomed this bill which will give at-risk women much-needed opportunity to reduce their chances of having a child with mitochondrial disease. Mitochondrial disease is one of the most common causes of childhood dementia.

NHMRC submission

NHMRC targeted call for research proposal submission. Transforming research to deliver therapeutics for this overlooked and under-funded group of disorders.

Presentations and Posters

Poster presentation

Presentation delivered by Head of Research, Dr Kris Elvidge PhD, at the Australian Dementia Forum in June 2021.

HealthData21 conference presentation

Sliding Doors: What Happens When Genomics Isn’t Integrated into Healthcare, was delivered by Childhood Dementia Initiative CEO, Megan Donnell at the HealthData21 conference in May 2021.

WORLD Symposium presentation

Head of Research, Dr Kris Elvidge PhD, presentation at WORLD Symposium in February 2021. The Symposium is the annual international research conference for lysosomal diseases.