Daughter's death fuels brain cancer researcher's work

When two-year-old Josephine was diagnosed with a rare brain cancer, her father switched focus, hoping he could do something about it.

Originally a pediatric leukaemia research specialist, Matt Dun began researching diffuse intrinsic pontine glioma (DIPG) in 2018 after he found out the only therapy available to his daughter was palliative radiation.

"I faced the most challenging and tragic circumstances," he told AAP.

Through genetic sequencing of Josephine's tumour, the determined father and his team identified a gene critical to the cancer's development.

She became the world's first child to be given the new therapies, slowing the tumour's growth and extending her life.

"Josie learnt to walk again, swim and have her one and only dance concert," Professor Dun said.

"We had a great Christmas with her cousins and our family."

Josephine died in December 2019 at the age of four.

Prof Dun along with his wife, Dr Phoebe Dun, founded RUN DIPG, a charity dedicated to improving outcomes for patients, their families and communities.

On Tuesday, he was awarded the Australian Society for Medical Research Medal at the National Press Club in Canberra.

"A lot of families don't want to talk about DIPG ever again and I don't blame them," he said.

"If Phoebe and I didn't think that what we did during Josie's journey was going to help the next child, I would have remained a leukaemia researcher and Phoebe would be a general practitioner, and we would go to Josie's grave and we would celebrate her life.

"But we generally believe, as a community, that we can change these outcomes."

For that to happen, the Australian government should double its contribution to the National Health and Medical Research Council to $2 billion a year, he said.

Every dollar spent on health and medical research returned $3.20, and this could increase to $10 if Australia developed these therapies into products that could be sold.

"Australia has world-class researchers and clinicians," Prof Dun said.

"But we're falling behind when it comes to translating that knowledge into improved treatments for children."

Improving links with academic institutions in other countries such as the United States would also help improve the speed and quality of research, allowing scientists to potentially develop life-saving cures.

This had become particularly important as universities become more reactionary, Prof Dun said.

"It's a very pop-culture tertiary education system where we've lost our independent thinking, our autonomy and now we are just a business," he said.