New organisation to tackle under-researched, underfunded and highly neglected fatal disease

On November 23, Childhood Dementia Initiative (CDI) is launching their new organisation at the Parliament House and releasing alarming research findings. 

As covered by ABC Breakfast this morning, this event will reveal a troubling health system blind spot. Childhood Dementia Initiative are launching their organisation at this 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 are 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 childhood dementia disorders.

Dementia in childhood has long been recognised by the medical community, but the collective group of disorders that cause childhood dementia 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 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, Ms 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 childhood dementia. Children are dying, we need to act fast,” Ms 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 Childhood Dementia. In 2021, it is estimated that there will be 2,273 Australians living with the disease.

“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.” Ms Donnell said.

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

Despite the devastating nature of childhood dementia 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.

 “Childhood dementia. 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 Childhood Dementia 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.

About Childhood Dementia Initiative

Childhood Dementia Initiative is a global organisation driving research and advocacy to urgently disrupt the impact of childhood dementia on children and families across the world:

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