HISTORICALLY, children diagnosed with the aggressive brain cancer known as DIPG were treated with radiotherapy then sent home to "make memories" with their loved ones when it didn't work.
But passionate Hunter researchers have been able to offer hope where there wasn't any - all thanks to "wonderful" philanthropic donations, community fundraisers and almost $2 million worth of support for local charity, RUN DIPG.
Associate Professor Matt Dun's "super-talented" team at the University of Newcastle has churned out 20 years' worth of research in just four years, with their work directly influencing and informing clinical trials around the globe.
The DIPG diagnosis, then the loss, of Associate Professor Dun's own daughter, Josephine, has inspired and driven his team to keep searching for the answers so many children and their families crave. They have had three research papers published in the past six months alone, with more to come.
"Much like Coronavirus research, we have been pulling out all stops and flooding the research to try and bridge the knowledge gaps that remain for patients that have these really bad brain tumours," he said.
A drug and radiation trial based on their research has begun in the US and is slated to start soon in parts of Europe and Australia.
"It is opening in 32 centres in America. Enrolment is going through the roof," Associate Professor Dun said. "That trial has been designed around patients. Rather than having all these exclusion criteria - which is what most trials do - we have designed the trial around patient participation and giving everyone at almost any stage of their disease an opportunity to receive therapy. For parents with kids with these kinds of diseases, they carry the burden of this diagnosis themselves, and that kind of weight is really crushing.
"To be told there's nothing to try, or no trials, is really demoralising and you feel hopeless and helpless. This research is helping to give them some options, and with it, some hope."
RUN DIPG is in the process of funding a paediatric brain cancer nurse to help take some of the stress and pressure off Hunter families being treated locally.
"We wanted to work with the paediatric oncology department and provide them with extra hands to help all kids with brain cancer that are diagnosed, cared for and treated locally," Dun said.
"The central nervous system tumour nurse will work directly with families to make their journey as smooth as possible. I'm proud RUN DIPG can support that nurse and try to take some of the stress and pressure off the families."
