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Every four days a young Australian dies with dementia.

It’s a difficult to reconcile the two pieces of information – dementia is a condition generally associated with advanced age.

However there are more than 700,000 children and young people living with childhood dementia globally with around 75% of them expect to die by the age of 18. In fact, the number of young people living with dementia is similar to those with Motor Neurone Disease and Cystic Fibrosis.

A new organisation, Childhood Dementia Initiative is driving world first action to completely reframe how we respond and care for children who develop dementia.

The Childhood Dementia Initiative was founded by a mother of two children with dementia, Megan Donnell, in pursuit of a vision was for every child to be able to live long and fulfilling lives.

Megan previously founded the Sanfilippo Children’s Foundation, an organisation focussed on the specific genetic cause of her children’s dementia. It was through her lived experience and her unique perspective gained from being at the helm of this global organisation that she discovered that despite all the good work in medical research and health – at least some of what she knew of was happening in silos.

More than 70 rare genetic conditions cause dementia in children.  In the past, research and services were directed to individual conditions.  What might be possible if a different perspective was applied to organising the effort across genetic conditions, focussing on what they had in common?

What opportunities might arise for increasing investment in research into dementia and interest in collaborations within the research community? What opportunities might there be for care providers collaborate in the provision of comprehensive support? What could be done to raise awareness and understanding about childhood dementia and the challenges faced by those children and their families?

The focus on commonality has yielded promising results for conditions including ageing dementia, cancer and cerebral palsy.

The Childhood Dementia Initiative has a singular focus on changing the approach to addressing all facets of dementia in children -  it is ambitious in that it aims for an immediate impact in support for children and families now, but also to create lasting change for generations to come through systemic change and therapeutic and research approaches.

If you want to learn more about this ambitious purpose driven organisation leading a global response, find out more here

This organisation is supported by The Percy and Ruby Haddy Foundation, managed by Equity Trustees.