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?
