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Childhood dementia – a disease that needs urgent attention


Childhood Dementia Initiative is launching their organisation in an event, along with the release of a Burden of Disease and White Paper report, to detail the extent, impact and horrific nature of childhood dementia.

These reports expose that a disease that is usually only associated with the elderly has fatal impacts on children across Australia and the world.

Childhood Dementia Initiative is circulating these reports to uncover the shocking impacts of childhood dementia, and also showcase the significant need to transform the way research and clinical care is currently delivered for the said disease.

Dementia in childhood has long been recognised by the medical community, but the collective group of disorders that cause it have received little attention from the public, governments and research funders.

Established by CEO Megan Donnell, CDI is the first organisation of its kind, with a

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vision to end childhood dementia through awareness, fundraising and significant research.  

As previous CEO of the Sanfilippo Foundation and seven years of professional and lived experience in the space,  Donnell identified key gaps in the research and has since dedicated her career to driving the representation of childhood dementia on a global scale.

“With less than five percent of all identified conditions that lead to childhood dementia having a treatment, it is time to transform the way we approach the disease. Children are dying, we need to act fast,” Donell said.

There are currently an estimated 700,000 children and young people living with dementia worldwide, with many young lives being devastatingly shaped by progressive brain damage, social isolation, suffering and early mortality rates.

With the disease being largely underrepresented and unknown, the new organisation hopes to secure philanthropic funding in order to drive awareness of the disease and its breadth, expedite research and advocate for systemic change in how research has been traditionally undertaken.

The Burden of Disease report has revealed that each year 129 children in Australia are born with a condition that will lead to the disease. In 2021, it is estimated that there will be 2,273 Australians living with this debilitating disorder.

“This report highlights the size, scale and wide-reaching impacts of childhood dementia and, importantly, outlines the overwhelming opportunity to act. The Childhood Dementia Initiative is launching to do just that.” Donnell said.

It is estimated that 1 in 2,800 children are born with a disorder that, if untreated, leads to the disease. These findings reveal that it is more common than well-known disorders, including cystic fibrosis.

Despite the devastating nature the disease causes and its collective incidence, prevalence and mortality rate being largely comparable with well-known diseases such as cystic fibrosis, motor neurone disease and childhood cancer respectively, childhood dementia has received little recognition of coordinated action towards solutions.

“The fact that these two words go together is appalling. We need to recognise this as a serious and urgent issue and fix it.” CDI Board Director, Sean Murray, has stated.

The report shows that the estimated economic cost of the disease is substantial; $40.4 million to the Australian healthcare system, $39.7 million in indirect costs, $233.5 million in costs of life years lost and $75.0 million costs to the National Disability Insurance Scheme (NDIS) in an average year.

With more than 70 disorders causing Childhood Dementia, all posing serious medical challenges and requiring extensive healthcare services, research company THEMA Consulting Pty Ltd have collaborated with CDI to publish key research, in a probono partnership.

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Based on a city where the mountain meets the sea and where antique houses line the streets, my mind is free to wonder, to wander and to write.


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