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.

1 in 2,800 children

are born with a childhood dementia disorder. This is more common than well-known disorders like cystic fibrosis.

48,300 die each year

Globally, 700,000 children and young people are living with childhood dementia. 48,300 die prematurely each year.

1096 years of life lost

The years of life lost to Australians due to early deaths is 1096 each year.

$389 million each year

The cost to the Australian economy alone is $389 million each year and will be at least $3.9 billion in the next decade.

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 70 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.

More about childhood dementia

The solution

Focus on dementia, the commonality, rather than the underlying genetic causes of childhood dementia.

This will drive the progress and care for 70+ 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?

Get involved