Childhood Dementia Initiative

Childhood Dementia Initiative Finding solutions to urgently disrupt the impact of childhood dementia on children across the world.

A huge congratulations to everyone who completed Steps for Skye this September. This year's walkers well and truly stepp...
08/10/2026

A huge congratulations to everyone who completed Steps for Skye this September. This year's walkers well and truly stepped up!

Participants committed to 15,000 steps a day for the month, with every step taken and every dollar raised going towards progressing research, care and advocacy for children with childhood dementia.

The crew had 22 fewer entrants than last year but still achieved an amazing result, raising more than in 2025 with donations of over $23,000. We couldn't be prouder.

To everyone who walked, fundraised and cheered each other on, thank you.

If this inspires you to set your own fundraising challenge, visit: https://www.childhooddementia.org/ways-to-give/fundraisenow.

Our friends at Mito Foundation want to hear from people affected by mitochondrial disease (mito) across Australia.The M...
05/10/2026

Our friends at Mito Foundation want to hear from people affected by mitochondrial disease (mito) across Australia.

The Mito Community Survey 2026 is open to anyone aged 16 and over who lives with mito or suspected mito, and to family members and carers. More than one person from the same family can take part.

Your answers will help build stronger evidence about the needs and priorities of the mito community and shape future advocacy, support and research.

The survey takes about 30 minutes, and you can save your progress and finish it later.

It closes 31 October.

Have your say: https://morestrategic.qualtrics.com/jfe/form/SV_0H9OUSSSynWYnoq

Thank you to everyone who supported Childhood Dementia Day - for the seven families who bravely shared their stories, an...
01/10/2026

Thank you to everyone who supported Childhood Dementia Day - for the seven families who bravely shared their stories, and for a community that listened, shared and gave.

Together, with the Hooper Shaw Foundation, you helped us raise over $200,000 to continue supporting children and families impacted by childhood dementia.

Children with childhood dementia can't wait. Thank you for standing with us as we keep pushing for the change they deserve.

https://www.childhooddementia.org/we-cant-wait

Clinical trials and therapeutic interventions come with real unknowns. What are the available options? Is my child eligi...
25/09/2026

Clinical trials and therapeutic interventions come with real unknowns. What are the available options? Is my child eligible? Will it help? What might saying yes mean for my family?

Clinical trials bring hope as well as hard questions, and often logistical challenges for families.

The Parent Knowledge Network is a free online program run by Childhood Dementia Initiative, where parents and carers across Australia share their knowledge and experiences with others who understand. This month's session brings parents and carers together to share their thoughts, fears, questions and learnings around this important topic.

đź“… Tuesday 29 September, 6.30pm AEST
Register here: https://www.childhooddementia.org/parent-knowledge-network

There's still time today to double your impact.Every donation made today is being matched, dollar for dollar, up to $150...
23/09/2026

There's still time today to double your impact.

Every donation made today is being matched, dollar for dollar, up to $150,000, thanks to the Hooper Shaw Foundation.

For children like Angelina, Caleb, Eddie, Hannah, Noah, Thomas and Toby, waiting isn't an option. Don't wait either.

Donate now: www.childhooddementia.org/wecantwait

The Childhood Dementia Initiative team paused for afternoon tea today to mark Childhood Dementia Day, and to reflect on ...
23/09/2026

The Childhood Dementia Initiative team paused for afternoon tea today to mark Childhood Dementia Day, and to reflect on why this work is so important.

Every conversation, every share and every donation today is helping build a future where children with childhood dementia get the care, support and treatments they deserve.

If you haven't donated yet, there's still time to make it go twice as far - every gift today is matched, dollar for dollar, up to $150,000, thanks to the Hooper Shaw Foundation.

Donate today. We Can't Wait.

www.childhooddementia.org/wecantwait



A huge thank you to , .syd and for our branded polos and and Valentina Pastry Lab for the catering.

Today is Childhood Dementia Day. Donate today and have twice the impact - all donations are DOUBLED. Over the last month...
22/09/2026

Today is Childhood Dementia Day. Donate today and have twice the impact - all donations are DOUBLED.

Over the last month you've heard about Angelina, Caleb, Eddie, Hannah, Noah, Thomas and Toby. Some are living with childhood dementia today. Some have died. Every one of them is why we're saying it plainly: We Can't Wait.

We can't wait for early diagnosis of the 145+ conditions that cause childhood dementia. We can't wait for more research into this group of conditions. We can't wait for treatments and improved survivorship. We can't wait for children and families to have the right supports around them every step of the way.

Your donations will help drive these changes forward.

Today, every donation is doubled, dollar for dollar, up to $150,000, thanks to the Hooper Shaw Foundation.

Donate now and play a part in changing the future for childhood dementia and the 2 Australian babies born every week with one of these conditions. We Can't Wait.

www.childhooddementia.org/wecantwait

22/09/2026

"Toby's body is failing him". He has childhood dementia. Tomorrow is Childhood Dementia Day.

Share Toby's story today. Donate tomorrow - Wednesday 23 September - when every gift will be matched, dollar for dollar.

We Can't Wait to change the outcome for kids like Toby.

https://www.childhooddementia.org/we-cant-wait

Most health and care professionals have never encountered childhood dementia. Many haven't heard of it at all.That's sta...
21/09/2026

Most health and care professionals have never encountered childhood dementia. Many haven't heard of it at all.

That's starting to change. Childhood Dementia Initiative is proud to partner with Dementia Training Australia on two new childhood dementia learning modules - the first of which, 'Introduction to Childhood Dementia', is now available. This free 30-minute course covers what childhood dementia is, how it may present, and its impact on children and families.

Dementia Training Australia provides free dementia education for the health and care workforce, funded by the Australian Government, so this partnership brings childhood dementia into mainstream professional training for the first time. This first module is also suitable for a general audience.

You can enrol now and complete the course to deepen your understanding of childhood dementia, or share it with anyone who would benefit, especially the health professionals and carers in your network.

Access the course here: https://dta.com.au/courses/introduction-to-childhood-dementia

20/09/2026

Angelina died from a childhood dementia condition at 21 years old. We Can't Wait to change the story for other children. Childhood Dementia Day is only a few days away.

Share Angelina's story today. Donate this Wednesday 23 September, when your donation will be doubled.

Their time is short. Your impact isn't. Help make a difference for other children and families.

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