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Major funding boost for Flinders research into Childhood Dementia

Adelaide mum Renee Staska with her 3 children now aged 5, 8, and 10.

The South Australian Government is partnering with the Little Heroes Foundation to provide a $500,000 funding boost for much-needed research into the fatal and aggressive condition known as Childhood Dementia at Flinders University.

Childhood Dementia is a devastating and under-recognised group of genetic disorders, which result in potentially irreversible brain damage beginning in childhood.

Like adult dementia, childhood dementia is progressive, meaning children lose their ability to talk, walk, read, write, and play. An estimated 91 Australians die with childhood dementia each year, almost as many who die from childhood cancer.

The nation-leading partnership will enable the Childhood Dementia Research Group at Flinders University to grow its research thanks to years of advocacy by Sarah Game MLC in securing this important funding.

The Flinders Research Group has already made an early discovery on a drug that changes some childhood dementia impacted cells to make them more like normal cells.

Professor Kim Hemsley outlines how the funding boost will support research into Childhood Dementia at Flinders University.

Professor Kim Hemsley Head of Flinders University Childhood Dementia Research Group said the University is pursuing world-leading research to develop new treatments for childhood dementia, and this crucial funding will support discoveries with the potential to improve the quality of life of thousands of children.

“The research has until now focused on treatments for Sanfilippo Syndrome and will be expanded to target other types of childhood dementia, including Niemann-Pick disease, thanks to the support of the South Australian Government and Little Heroes Foundation.”

“This funding is also an investment in the next generation of researchers in South Australia with Dr Siti Mubarokah leading this important medical research.”

According to the Childhood Dementia Initiative, 1 in every 2,900 babies is born with a condition that causes childhood dementia. Half of all children with dementia die by the age of ten.

Approximately 2,500 Australian children have dementia, 120 of them in South Australia. To support vital research into the condition, the State Government will contribute $250,000 to the Little Heroes Foundation, which itself will contribute $250,000 to support research outcomes.

Chris McDermott, Founding Chairman and CEO, Little Heroes Foundation said he first made aware of Childhood Dementia in August last year, when he learned of Adelaide mum Renee Staska, whose 3 children now aged 5, 8, and 10 all have the condition.

‘”Yes, you heard it right. Childhood Dementia. No longer a condition purely for the elderly. This relatively new illness takes almost as many lives of 1- to 16-year-olds as cancer. There is no treatment. There is no cure.”

“We at Little Heroes Foundation have been supporting families like Renee’s while investing in researchers at Flinders University, who are busy looking for a breakthrough.”

“Through this partnership with the Government, we here in South Australia can become world leaders in this vital area of research.”

Little Heroes Foundation Founding Chairman and CEO, Chris McDermott with Adelaide mum Renee Staska.

Sarah Game MLC said she is incredibly proud to be part of securing this funding and grateful to the Premier for the significant step taken to save the lives of these children and publicise this disease that is taking the lives of as many children as childhood cancer.

“Childhood dementia is a genetic disease that is currently always fatal, this means tragically multiple children from the same family are affected. Researchers advise me that with funding a cure may be found in our lifetime.”

Premier Peter Malinauskas said its hard to fathom how challenging a diagnosis of Childhood Dementia is for families.

“I am in awe of the strength of parents who manage this heartbreaking condition with their young children. I am proud to lead a government which is making investments like this one, which will move us closer to finding ways to manage, and potentially cure, childhood dementia.”

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