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
What's coming up
Find out about upcoming events, activities and ways you can get involved.
Coming up
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.
The devastating impact
First it takes their brain
Then it takes their life
Dementia is usually only associated with the elderly. Tragically, hundreds of thousands of children also suffer from dementia.
It’s caused by more than 100 neurodegenerative disorders, many of which are not yet understood.
For parents, the diagnosis often comes as a complete shock. They may have noticed developmental delays, but do not expect to hear their child is terminally ill. Or that there is no cure.
They must watch their child’s mind and body slowly degenerate.
Their child will stop recognising those who love them most.
They will forget how to talk and walk.
They will die before they reach adulthood.
Together we can and will end this suffering and death.
The solution
Focus on dementia, the commonality, rather than the underlying genetic causes of childhood dementia.
This will drive the progress and care for 100+ genetic disorders as a collective.
Increase Awareness
You can’t unhear the words ‘childhood dementia’. It reframes the challenges in a more appropriate way, allowing us to better empathise and action solutions. We will build a movement across communities, governments, industries, health and social care.
Accelerate Therapeutic Development:
We will highlight commonalities for research. We will enable economies of scale and grow interest and investment. We will identify opportunities to collaborate, and we will mitigate inefficiencies in duplication of work. We will accelerate the development of therapies that change lives.
Improve Care and Quality of Life:
We will drive systemic change to respond to the collective and build pathways for children to access appropriate care previously not available to them. We will inform and educate to truly deliver quality health and social care for these children.
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?
