Childhood Dementia Initiative

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

We are delighted to announce that Andrew Carter has been appointed as the inaugural Chair of Childhood Dementia Initiati...
04/08/2026

We are delighted to announce that Andrew Carter has been appointed as the inaugural Chair of Childhood Dementia Initiative's Board.

Andrew brings more than 35 years of experience in Australia's health technology and life sciences sector, and 20 years of governance experience across for-profit and for-purpose boards. This includes roles as past Deputy Chair of Rare Voices Australia, the national peak body for people living with rare disease, and past Chair of Melbourne City Mission, one of Australia's oldest and largest community services organisations. Andrew is currently a Regional Councillor of Yalari, a national Indigenous education and leadership organisation, a Non-Executive Director of Pure Solutions Australia and Chair of MedWise Consulting. Just as importantly, he is deeply values-driven and is an active, hands-on volunteer, working with Anglicare Victoria’s homelessness and emergency relief services.

"Through my work in the rare disease community, I've seen what families face when a condition is poorly understood and poorly supported. Childhood Dementia Initiative is changing that in the childhood dementia space; with evidence, ambition and real momentum. I'm honoured to serve as its inaugural Chair."

This is a milestone moment for us. Since 2020, we have built a world-first evidence base, secured bipartisan government support and co-designed nationally significant reforms across health, disability and care. Appointing our inaugural Chair marks the next stage of our growth and evolution, and Andrew's leadership will help us deliver on our ambitious goals and strategy.

Every 3 days in Australia, a baby is born with a condition that causes childhood dementia. With Andrew leading our Board, we are better placed than ever to change what the future holds for these children and their families.

Welcome, Andrew!

Have you heard it yet?!  Megan Maack shares a special insight to the reason she started Childhood Dementia Initiative wi...
03/08/2026

Have you heard it yet?!

Megan Maack shares a special insight to the reason she started Childhood Dementia Initiative with Hamish Macdonald and Jim Rogers on ‘Hold The Moment’ with Dementia Australia .

Listen on your favourite podcast app or watch on YouTube here:
https://youtu.be/lCwJPOaYSYs?si=681nkiiF5pNlmd6K

There's a bonus extended interview with Megan, and driving action from her experience available here: https://youtu.be/cGpeFtxU-AE?si=8-hHuFsARq_jv2Dj

This week starting Monday August 3, keep an ear out for a very special ‘Hold The Moment’ with Dementia Australia!Rachel ...
01/08/2026

This week starting Monday August 3, keep an ear out for a very special ‘Hold The Moment’ with Dementia Australia!

Rachel and Eli, Hannah’s Mum and Dad share with gut wrenching honesty the experience of Childhood Dementia in conversation with Hamish Macdonald and Jim Rogers.

Listen on your favourite podcast app, watch on YouTube and keep following for a link as soon as this episode drops August 3.

The words 'palliative care' can bring up an understandably strong reaction. But for many families of children with child...
16/07/2026

The words 'palliative care' can bring up an understandably strong reaction. But for many families of children with childhood dementia, it becomes one of the most important supports they find.

The Parent Knowledge Network is a free online program 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 about palliative care.

Register to take part here: https://www.childhooddementia.org/parent-knowledge-network

A milestone for childhood dementia research: We are excited to share that more than 20 research grant applications have ...
09/07/2026

A milestone for childhood dementia research: We are excited to share that more than 20 research grant applications have now been submitted to the Australian Government's medical research funding body, the NHMRC. This followed the government announcement earlier this year that it would dedicate $5 million to childhood dementia research.

Our Head of Scientific Affairs, Dr Kris Elvidge, engaged with researchers on their work and applications. We are delighted to report a wide range of valuable projects were put forward. There is real potential for new knowledge, better care and future treatments reaching children and families. And we're profoundly inspired by researchers turning their attention to childhood dementia.

This is exactly what we hoped for when we made the case for this funding.

We'll share more as the outcomes of this funding round become known.

We were delighted to join Dementia Australia  to celebrate the launch of the 3rd season of Hold the Moment, the award-wi...
06/07/2026

We were delighted to join Dementia Australia to celebrate the launch of the 3rd season of Hold the Moment, the award-winning podcast sharing real, honest stories of life after a dementia diagnosis.

👉What made this moment especially meaningful for us: joining Eli and Rachel, and their children Hannah (who lives with childhood dementia) and Benji. Their family's experience with childhood dementia will be featured in an episode this season.

👉Dementia is so often thought of as something that only affects adults. Having a family's experience of childhood dementia included, alongside adult voices, is a powerful reminder that dementia affects people across the entire lifespan.

Eli and Rachel's episode drops on 4 August 2026, and it is meaningful and deeply moving. It's a must-listen for anyone who wants to understand childhood dementia more and it's a chance to hear Eli and Rachel articulate their lived experience with generosity and openness. Our CEO, Megan Maack, also features in this season, speaking to the importance of inclusion.

Thank you to hosts Jim Rogers and Hamish Macdonald for holding space for this story with such care, and to the whole team behind this episode. ❤

We are really pleased to share that  Butler MP, Australia's Minister for Health and Ageing and Minister for Disability a...
01/07/2026

We are really pleased to share that Butler MP, Australia's Minister for Health and Ageing and Minister for Disability and the National Disability Insurance Scheme, took the time to meet with our CEO, Megan Maack.
Together with Anna Pak Poy and Olivia Nassaris from Rare Find Foundation, they spoke about the realities of childhood dementia, the progress we've made, and what's needed next.
👉Why does this meeting matter so much? Childhood dementia isn't only a chronic, complex, life-limiting health issue. Children also live with disability that changes and progresses over time and they need significant support. That means real change for children relies on ensuring they have quality care across our health and disability systems — areas that sit squarely within Mark Butler's portfolio.
The solutions that we are building and advocating for span health and disability. They include the National Childhood Dementia Unit, a virtual centre of expertise dedicated to improving survivorship and symptom management for children with dementia.
You can learn more about the Unit and why it matters here: https://www.childhooddementia.org/news/funding-urged-for-care-crisis-solution

"It creeps. It's a thousand small thefts before it becomes one enormous one.  Childhood dementia isn't dramatic the way ...
29/06/2026

"It creeps. It's a thousand small thefts before it becomes one enormous one. Childhood dementia isn't dramatic the way illness is on television. It is quiet. It's a child reaching for a word that isn't there anymore. It's your little brother looking at a toy he used to love and not remembering what to do with it.
And it does not stop. There is no plateau. There is no medication that holds the line."

These words come from Jack, big brother to Thomas, who died from childhood dementia in 2024.

👉Jack wants to ensure that other families don't face what his did.

⭐Tomorrow is the last day of the financial year. Please read Jack's powerful message and give to Childhood Dementia Initiative before the end of 30 June. All donations over $2 are tax deductible:

https://www.childhooddementia.org/itstime

With your support, we can create a future with hope, treatments and the right care for children living with childhood dementia.

We're looking for a Fundraising Manager - Community & Events to join the Childhood Dementia Initiative team.Our communit...
24/06/2026

We're looking for a Fundraising Manager - Community & Events to join the Childhood Dementia Initiative team.

Our community and events fundraising program is ready for its next chapter. This role will take what we've already built and scale it, expanding our events portfolio, deepening peer-to-peer fundraising, and building a loyal community of supporters behind our mission.

If you're energised by taking something with real foundations and making it fly — we'd love to hear from you.

If you know someone who could be our next Fundraising Manager, please share this with them!

📍 Hybrid | Brookvale, Sydney
⏱ Full time or 0.8 FTE considered
📄 Permanent

Find out more here: https://au.seek.com/job/92856243

The Parent Knowledge Network is a free online program for parents and carers across Australia. It’s a space to connect, ...
23/06/2026

The Parent Knowledge Network is a free online program for parents and carers across Australia. It’s a space to connect, share lived experiences and exchange practical knowledge. Whether you’d like to contribute your own insights or simply listen and learn from others, you’re welcome to join the conversation. This month we explore ‘Isolation and connection’ with parents Eli and Nicole.

Register to take part here
https://www.childhooddementia.org/parent-knowledge-network

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