Our purpose: urgently disrupting the impact of childhood dementia

We’re here to find answers. We’re here to find better ways to research and treat the 70+ disorders that lead to childhood dementia.

Through bold, innovative approaches to both advocacy and research we strive to fast-track effective therapies and cures until we have a world without childhood dementia. 


We bring great minds together traversing countries, diseases and specialities, combining advances in emerging fields, to enable economies of scale across the medical research pipeline. We are driving a global, collective approach, with end-to-end innovative, fast-tracked and collaborative research programs that lead to treatments and cures for children.


We raise awareness and understanding of childhood dementia and the devastating impact it has on children, their families and our economy. We advocate for funding, research and systemic change across government, regulatory bodies, patient groups, medical and scientific communities and the general public to fast-track solutions for families dealing with the heartbreaking diagnosis of childhood dementia.

Why now?

This is a time of unprecedented technological advancement and there is significant opportunity to apply this progress to childhood dementia disorders. This includes the fields of genomics, gene editing and gene therapy, artificial intelligence, synthetic biology and stem cell therapies.

Every month, more babies are born with disorders that lead to childhood dementia. We must find the answers, fast.

“We are living in the 21st century yet there is no cure. We are doing gene-editing, a man went to the moon, yet my child is dying from a condition known for 100 years – it’s unfathomable.”– Anna, mother of Sebby

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.

Our strategic plan

“While the individual disorders may be rare, when we consider there are at least 70 conditions that present as childhood dementia, the incidence and impact on the health system and families is far greater than most people realise.”

“When we look at this constellation of diseases, identifying subsets with similar mechanisms empowers us to have learnings across individual diseases - achieving economies of scope and opportunities for impact across patient populations.  By working under the umbrella of childhood dementia, there is tremendous potential to translate this research into therapeutics and diagnostics. It is such an innovation.”

-Tiffany Boughtwood, Board Director