Act now to help kids with dementia like Angelina

People around the world ask about Angelina. 
Here's a special update from her mum, Niki.

My family is impacted

by childhood dementia

I work with families 

affected by childhood dementia

I'm a researcher

interested in childhood dementia

I want to give

to help children with dementia

Right now, thousands of children are suffering and dying slowly with dementia
and most people don’t know about it.

They will stop recognising their parents and those who love them most. 

They will forget how to talk and walk. 

They will die before they reach adulthood.

100+ disorders with no cure

There are over 100 genetic conditions that cause childhood dementia. They are all terminal. There are no cures.

1 in 2,900 babies

is born with a condition that causes childhood dementia. This is as common in Australia as well known disorders like cystic fibrosis.

50% die by age 10

Half of the children with dementia die by the age of 10. Most (71%) die before reaching their 18th birthdays.

Severely under-researched

Per patient, childhood dementia attracts 12 times fewer clinical trials than childhood cancer.

News

The transformative shift we lead

We bring all of the conditions that cause childhood dementia together under one umbrella.

Driving the collective consideration of the 100+ childhood dementia disorders in a world-first approach with potential to transform the lives of children with dementia and their families for generations.

We do things differently

We’re the organisation that’s leading change for kids with dementia. Standing with us is a movement of families, researchers, health professionals, donors and concerned people.

Our approach is to not duplicate services. We drive changes to systems and policies to meet the needs of children with dementia and their families; and we’re generating an extraordinary wave of innovative research. We will take what we learn in Australia where we started, to empower change globally. Learn more about our approach.

What's Coming Up

The Winter Gala

An unforgettable night of connection & meaning. Jun 2025.

Run free

Run for kids with dementia and get your entry fee back.

Community of Practice

Health & care professionals: share and learn together.

Inca Trail Challenge

In support of kids with dementia. Oct 2025.

Research webinar

Experts discuss accelarating research.

Be a catalyst of change

Changing the global discourse and response to childhood dementia

requires investment and critical buy-in from influencers across sectors.

You cannot leave children with dementia behind.

Will you be the change these children need?

Get involved