NEWCASTLE cancer researcher Dr Matt Dun was supposed to be speaking alongside the Federal Health Minister in Melbourne on Thursday to highlight the importance of more funding for research on Childhood Brain Cancer Awareness Day.
But the reason he couldn't make it is the same reason the research is so desperately needed.
His four-year-old daughter, Josie - who has been fighting DIPG - was admitted to hospital in the early hours of Thursday morning.
"She is not doing OK. She is coming to the end of her journey," Dr Dun said.
DIPG - or diffuse intrinsic pontine glioma - is a "ferocious", inoperable cancer that almost exclusively affects children.
Dr Dun, a University of Newcastle and Hunter Medical Research Institute biologist, was already focused on paediatric high grade cancers. But since Josie's diagnosis, he has also turned his attention to understanding DIPG, and developing better treatments for it.
"We wanted to try to highlight the importance of research, and funding research, on Brain Cancer Awareness Day," he said.
"In Australia, 100 kids die of cancer each year, 36 of those are from brain cancer, and 20 of them are from DIPG.
"Of those 36, more than half of them are from one particular brain cancer, which is totally untreatable - there is no recognised treatments whatsoever.
"Until we do the work to really understand the biology of the disease, kids are still going to face a bleak prognosis, which is 300 days from diagnosis to death."
Health Minister Greg Hunt said the Government would provide $5 million from the Medical Research Future Fund for childhood brain cancer clinical trials.
The grant round is due to open on November 15.
Dr Dun was recently awarded $600,000 in Federal funding to develop targeted treatments to improve the outcomes of children with acute myeloid leukaemia and DIPG.
"It means that I can keep pushing this forward," he said.
Read more: Daughter's diagnosis inspires Hunter cancer researcher
Fundraising group, RUN DIPG, has also raised close to $110,000 to support his research.
RUN DIPG teamed up with The Kids Cancer Project to encourage people to wear gold and grey on Thursday for Childhood Brain Cancer Awareness Day.
