Childhood Dementia Initiative

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Childhood Dementia Initiative

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

05/06/2026

The Winter Gala silent auction is now open — and you don't have to be in the room to bid.
Browse and bid on an incredible range of prizes, including a private Bali villa escape, Robbie Williams Britpop Tour tickets, Australian Open VIP Suite Nine access, a rugby double header with the Wallabies taking on the All Blacks for the Bledisloe Cup, and more. Share the link with anyone — the more bidders, the better for kids living with childhood dementia.
https://app.galabid.com/cdi/items
👉📍Please note: prizes not collected on the night must be picked up from our Brookvale office in Sydney by 26 June 2026. Please keep this in mind when bidding and sharing with friends and family outside Sydney!

04/06/2026

➡️ Do you have education professionals in your network? We'd greatly appreciate you sharing this with them.

We are seeking input from education professionals to inform new resources on supporting children with dementia and their families.

The survey takes 10-15 minutes and no prior knowledge of childhood dementia is required. Closes Friday 26 June.

All educators welcome: early childhood, classroom teachers, special educators, learning support staff, school counsellors, principals, integration aides, allied health staff and others.

The survey is here: https://www.surveymonkey.com/r/CDI-Education-Prof-Survey

03/06/2026

Last week, our Head of Scientific Affairs, Dr Kristina Elvidge, presented at the 19th International Child Neurology Congress (ICNC) in Taiwan, one of the most significant gatherings of paediatric neurologists in the world, bringing together over 1,500 clinicians and researchers from across the globe.

Kris presented 3 times across the congress program on childhood dementia.

This was the first time, childhood dementia, as a unified category spanning 140+ genetic conditions, was formally brought into the spotlight at ICNC.

Previously, the dementia experienced by children was largely treated as a secondary symptom of individual, fragmented conditions.

➡This is especially important because paediatric neurologists are key members of care teams for children with childhood dementia. Reaching this community — connecting with leaders, sharing the evidence base, and growing the movement for collective action — is essential to our mission of transforming outcomes for children and families.

The theme of ICNC 2026 was "Connecting the Dots, Mapping the Future" and that's exactly what this work is about.

28/05/2026

He was deeply loved and profoundly shaped his brothers and family. Thomas died 2 years ago with childhood dementia. His parents, Rose and Brett, are sharing his story to create change for all children with dementia.

It's time for children like Thomas to have the chance to live long, happy lives.

Please give to Childhood Dementia Initiative before 30 June. All donations over $2 are tax deductible. https://www.childhooddementia.org/itstime

20/05/2026

"What I want you to know about Thomas is that, gee, he was a happy boy! He always smiled. He loved laughing. He was so easy to please. He suffered so much, and yet he had this warm, enlightening joy."
These are the words of Brett, Thomas's dad. Thomas is pictured here, laughing with his big brother, Jack.
Thomas was born with Sanfilippo syndrome, a condition that causes childhood dementia. He died in 2024.
Brett and Rose are sharing Thomas's story this tax time so that no other family has to face what they did — trying to find answers and support while caring for their beautiful, joyful Thomas as he lost his abilities and life.
Please give to Childhood Dementia Initiative before 30 June. All donations over $2 are tax deductible. It's time to give kids like Thomas the chance to live long and happy lives.
https://www.childhooddementia.org/itstime

19/05/2026

Early childhood professionals — including educators and allied health professionals — are uniquely placed to make a difference to the lives of children living with childhood dementia. They can be among the first to notice changes in a child's development, and they can help families navigate complex systems too.

That's why we are so pleased that, last week, our amazing National Services Manager Alison Grozier presented to professionals and researchers from across the early childhood intervention sector on the need for collaborative practice in childhood dementia care at the PRECI 2026 National Conference in Adelaide.

Connecting and collaborating with this community of professionals is so important to ensuring children and families get the support they need when they need it.

A big thank you to the conference organisers for including children with dementia. The understanding and collaborations that opportunities like this generate can have deep and lasting impact.

18/05/2026

On Friday 15 May, Childhood Dementia Initiative brought the Long Table consultation to Melbourne — and the conversations that took place were exactly why this model matters.
The photo captures the Long Table method well: parents and carers of children with dementia seated at the table, sharing their lived experience freely and in their own words. Around them, professionals from health, disability, allied health, palliative care, research, and policy seated in a respectful outer circle, listening without interruption.
Before the session, parents were asked to think about the challenges they have encountered in the Victorian and Tasmanian health systems, what has worked well, and what improvement would create the greatest impact. True to the Long Table model, the session itself was entirely unmoderated, unfacilitated, and parent-led.
We are deeply grateful to the parents who attended and shared their reflections. The conversation they had helped deepen understanding of families' experiences and will be captured in a follow-up report.
We are also grateful to all who came to listen with such openness. In the conversations after we closed the table, we saw genuine interest in making real improvements for children and families — and that matters.
Big thank you also to the CommBank Staff Foundation for making this event possible. 🙏

13/05/2026

"In the beginning, we wanted to keep it quiet — that our little bouncy boy would one day become severely ill, and a cruel terminal illness would take him from us. Because he was still the same Thomas when he was diagnosed."
Brett is Thomas's dad. When Thomas was diagnosed with a form of childhood dementia, a doctor gave Brett and Rose a single sheet of paper downloaded from the internet. They said it was fatal. They said the family would need to become carers. Then they sent them home.
"We didn't know that we would have to leave our jobs. There was no NDIS back then, so we — his brothers, Rose, and I — were his carers."
Wherever they turned for help — doctors, allied health specialists, anyone — the first thing they were told was: "You probably know a lot more than I do."
That's why Brett and Rose are sharing Thomas's story. So that no other family has to face what they did.
Please give to Childhood Dementia Initiative before 30 June. All donations over $2 are tax deductible.
👉It's time that kids like Thomas have the chance to live long, happy lives.
https://www.childhooddementia.org/itstime

12/05/2026

We are down to just 2 tables! Don't miss The Winter Gala, Sydney's most meaningful night of art, connection and impact.
📍Friday 5 June 2026 at the stunning Art Gallery of NSW
→An exclusive, after-hours viewing of the Archibald
→3-course dinner and drinks
→Live entertainment and curated auction experiences
→Connection with people changing the world for children with dementia

⭐Book your tickets here: https://events.humanitix.com/the-winter-gala-2026

👉Big thank you to our Bronze Sponsor, Community Bank Freshwater

11/05/2026

We are very excited to share the launch of a world-first program for parents of children with dementia: the Childhood Dementia Parent Knowledge Network.
The Parent Knowledge Network brings parents together once a month to share what they know and perhaps what they wish someone had told them. The focus is on the real-life knowledge and experience that parents have built. Like managing after the diagnosis, or finding good support workers and getting used to having them in your home, or finding genuine connection despite how profoundly isolating it can be to face childhood dementia.
It's free, online, and built entirely around what families told us they actually need: parents — who get it — sharing what they've learned with parents who need it.
If you know a family living with childhood dementia, please share this with them.
👉 Find out more and register: https://www.childhooddementia.org/parent-knowledge-network

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Sydney, NSW

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http://www.childhooddementia.org/

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