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Newcastle Herald

Health

Simon McCarthy

They ran a marathon and then rode 850 kilometres in pouring rain all to help fight DIPG children's brain cancer

Marina Neil Hunter Brisbane (Geopolitical Entity) Matt Dun Cancer Brain Brain Cancer Newcastle Gold

The Gold Coast Marathon was only the beginning.

Three riders from the Hunter - John Pirlo, Lucas McBeath and Odin Mackintosh - wanted to go big; a mammoth effort to raise funding and awareness for RUN DIPG, the Hunter organisation championing children's brain cancer research at home and around the globe.

Scenes as RUN DIPG charity cyclists John Pirlo, Lucas McBeath and Odin Mackintosh arrive in Newcastle after riding from Brisbane to the Hunter to raised funds and awareness for RUN DIPG. Picture: Marina Neil

The result was a marathon run, more than 850 kilometres from the Queensland Institute of Medical Research to its Hunter counterpart tirelessly ridden, and an expected cumulative total of more than $120,000 raised between the two events to continue research into the treatment of the most aggressive form of children's brain cancer, DMG/DIPG.

Hunter biomedical scientist, associate professor Matt Dun, who has been researching the treatment of DMG/DIPG since his daughter Josephine was diagnosed in February 2018, was at the Hunter Medical Research Institute to welcome the trio across the finish line on Saturday.

"It's incredible," he said, "More than 850 kilometres on a bike, plus the marathon, it's incredible. It's really a wonderful cause and they have raised some substantial funds, and it's great to get the community together."

The fundraising amount - estimated to be roughly equivalent to funding a PhD student's three years of research into battling the vicious cancer that accounts for one in five childhood deaths in Australia each year - will be directed to a collaborative network of researchers around the world, including Dr Dun in the Hunter, dispersed through research grants annually.

DMG/DIPG forms in the brainstem and is typically diagnosed between the ages of five and seven. Fewer than 10 per cent of children survive more than two years after diagnosis.

"Because we didn't do DMG/DIPG or children's brain cancer research in the Hunter prior to my daughter's diagnosis, we didn't have the infrastructure or the sophisticated technologies to push the envelope of DMG/DiPG research," Dr Dun said at the weekend, "RUN DiPG has really been instrumental at purchasing the equipment that we need to really make huge differences.

"We have gone from no DMG/DIPG research in the Hunter four years ago to having an international clinical trial, which we expect 500 patients to be involved with."

Riders McBeath, Pirlo and Mackintosh were greeted by a crowd of supporters on a sunny Saturday morning, after toughing out days of heavy rain, wind and chilly temperatures on the long-haul ride down the east coast.

"It was only today and yesterday that we had the sun out," McBeath said moments after stepping off his bike, "Our support crew were phenomenal - outside of the actual rain, they had spare clothes and towels and pumpkin soup and bread and all those beautiful things along the way. But it was tough. There were a couple of days there where we got down to single-digits and some pretty ferocious winds and pretty torrential rain, but compared to what families are going through with DMG/DIPG, it's a minor consequence."

Dr Dun described the battle against childhood cancer as "medicine's man on the moon" Saturday - a seemingly insurmountable task in search of a cure, but one that he and his fellow researchers would continue to face undaunted.

"Let's not forget that 30 years ago, children diagnosed with acute lymphoblastic leukemia faced roughly the same chance of survival as children with DMG/DIPG. But the research sparked because of the commonality of that disease, and through international efforts around the world, has changed the outcome where we have gone from around a 10 per cent chance of long-term survival to around a 92 per cent chance of survival.

"We're of the same opinion - we're on the same mission - and we believe we can do it because we have the evidence to suggest that some of the drugs that we are using, and some of the treatment ideas we have, are providing a benefit."

Dr Dun's research, which seeks to understand the biology of DMG/DIPG tumours and to exploit vulnerabilities through a combination of drugs to extend a patient's survival, is in the process of pre-clinical models with expectations it will open to clinical trials in the future.

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