Press Interview: NZ Herald

Aussie brain cancer researcher overwhelmed by Wellington teenager's selfless campaign to fund cure

Written by Sophie Trigger for the NZ Herald. Published 9 October 2021.

An Australian researcher fighting for the cure for a deadly childhood brain cancer is overwhelmed by the selfless campaign of a Wellington teenager living with the terminal disease.

Diagnosed with inoperable stage 4 brain cancer in February, 15-year-old Jemima Gazley decided to start a Givealittle page last weekend to raise funds for the research of Dr Matt Dun, who is working towards a better future for children with the disease.

Jemima wanted the money to be a "legacy of her work on earth", and with one day to go the fund totalled more than $285,000.

Dr Dun, Associate Professor at the University of Newcastle, said Jemima's efforts to raise money for his research were "incredible".

"I read her thoughts [on the Givealittle page] and was struck by how courageous and selfless she was being," he said.

"It's quite remarkable to think of a child that's able to sympathise with what's going on and really focus her efforts on the future."

Dr Dun is involved in a research group focusing on the most deadly form of brain cancer in children, found in the brain stem – known as diffuse intrinsic pontine glioma (DIPG). It's the cancer Jemima was diagnosed with earlier this year, and the same that took the life of Dun's 4-year-old daughter Josie in 2019.

With an average survival of just nine months post-diagnosis, DIPG affects up to 20 children in Australia – and a couple in New Zealand – each year.

As a leading researcher and parent of a child with the disease, Dun is the first port of call for almost all of them, including the Gazleys.

"It's responsible for half the brain cancer-related deaths in children and it's a leading form of death of any cancer in children - because it takes every child that is diagnosed with it."

"The prognosis for five-year survival is less than 1 per cent and less than 10 per cent of children will live two years post-diagnosis."

Dun said the current treatments for children with DIPG were "horrific", and part of their work was related to extended the survival period for patients.
A clinical trial in the United States had been able to increase survival rates by six months, and an international clinical trial – coming to Australia and New Zealand next year – would pair this drug with a different one in the hope of increasing it further still.

Since focusing his attention to DIPG following the death of his daughter, Dun said their research group had made great progress – and the money raised by Jemima would be a great contribution.

"Our group has gone from one DIPG researcher to seven, and this will continue that, it will continue us to keep moving forward," he said.

"In three and a half years we've gone from having no new treatments to identifying two new drugs for DIPG.

"We've had one completed trial and we're about to start another huge clinical trial that's international."

Conducting clinical trials and growing the cancer cells in the lab were both "hugely expensive".

"If you think about employing one person at the academic level, it costs $120,000 or $130,000 a year," he said.

"And unfortunately DIPG is unlike any other cancer – to grow them in the lab you have to feed them proteins and media that come from human background ... it requires lots of people and lots of time and money."

With limited government funding, this money usually came from the families of patients, Dun said.

"Families are driving everything in terms of the disease, families are responsible for all the major breakthroughs in DIPG and continue to be," he said.

"Because it's such a devastating course, when everything's said and done it is a real motivator to try and make sure other families don't have to go through such a hopeless situation."

Dun thanked the New Zealand public for their generous donations, and said the funds would help drive their research.

"We're really grateful for Jemima's thoughts and all her hard effort in raising this money, and it will be used to really push our programme," he said.

"And we hope this initial clinical trial will provide a bit more time for families, and we can really push the boundaries on how we can get long-term survivors.

"We need independent scientists with their own ideas to crack this – this is the biggest mountain in medicine."