Millions to help a hero’s mission save kids from rare brain cancer

Professor Matt Dun lost his daughter to deadly DIPG. With the help of another brave little girl, he has received critical funds for his research into better treatments — and maybe, one day, a cure.

A medical researcher who has dedicated his career to tackling the deadliest cancers affecting Australian children has received a crucial federal government grant to fund a groundbreaking project.

Professor Matt Dun lost his four-year-old daughter Josie to diffuse intrinsic pontine glioma (DIPG) six years ago. He has led innovative research aimed at developing desperately-needed treatments for the disease, which currently has no cure, and sees children live less than a year after diagnosis.

The $2 million grant, part of a $20 million federal initiative to combat childhood brain cancers, supports Prof Dunn and his international team’s research into DIPG.

Using cutting-edge technologies, including spatial genomics and blood cell profiling with data analysed by machine learning and artificial intelligence, the team aims to understand how DIPG adapts to current treatments and identify ways to overcome these challenges with established therapies.

The project focuses on developing personalised, sequential treatment plans that use available therapies more effectively, minimising delays in implementation.

Eve Daher with her mum Angie has met with politicians to help lobby the Federal Government for desperately needed funds, despite her own health battles. Picture: Supplied

By integrating advanced AI-driven data analysis, the research seeks to optimise the timing and combination of therapies for maximum impact.

“As a field, we are deeply grateful to the Albanese Government for taking this crucial first step in funding research and clinical trials aimed at improving outcomes for children with brain cancer,” Prof Dun said.

“Brain cancer is the leading cause of cancer-related death in children, and for the most aggressive forms, like DIPG, we currently have no effective treatments.

“This investment represents hope for families who so desperately need breakthroughs.

“I want to express my deepest gratitude to the charities, families, and advocacy groups who have tirelessly driven change and supported research that would not have been possible.”

Prof Dun, from the University of Newcastle, says the funding honours the memory of the 20 to 25 Australian children who die from DIPG each year.

Eve Daher’s health drastically declined late last year. She doesn’t want other children to be trapped in their own bodies like she is. Picture: Supplied

Eve Daher is one of the longest surviving Australian children living with DIPG. Picture: Supplied

TRAPPED IN HER BODY, BUT A POWERFUL VOICE

Nine-year-old Eve Daher, one of Australia’s longest surviving DIPG patients, has played a vital role in advocating for this funding.

Eve, who is on a combination of drugs discovered by Prof Dun’s research, has defied the odds, living nearly four years post-diagnosis.

Last year, Eve experienced a significant decline, leaving her wheelchair-bound and unable to speak or use her hands.

Her mother, Angie, recalled the challenging period: “We were told the end was near, but by some miracle, she pulled through.”

Now, with therapy six days a week, Eve communicates in her own unique way and continues to make small, hopeful improvements.

“She’s incredibly intelligent and knows exactly what’s happening,” Angie said.

“When she heard about the funding, she wanted her voice to be heard. She told us: ‘I don’t want any other kid to feel trapped in their body like me’.”

Ruby Pringle died after battling DIPG. Her parents continue to lobby for funding to find a cure and better treatment options. Picture: Supplied.

Ryley Kemp succumbed to the devastating brain cancer. His parents continue to fight for funding so no other Australian children have to suffer. Picture: Supplied

Eve’s family, alongside other bereaved parents, including Hannah and Andrew Pringle – parents of Ruby – and Beau and Terry Kemp – parents of Ryley – have been relentless in their lobbying efforts to support Australian brain cancer research and clinical trials.

In a joint statement, the families said: “We are so relieved and thankful for Health Minister Mark Butler’s ongoing support, as well as the Department of Health’s collaboration. This funding represents a monumental achievement in recognising DIPG at a federal level, a crucial turning point in the fight against this devastating disease.

“Our children, Eve, Ruby, Ryley, and Josie continue to inspire us to push for change, ensuring no parent has to endure the heartbreak of losing their child to DIPG as we have.”

The Sunday Telegraph has lobbied for vital funding through the Maddy’s Wish Campaign. Sydney schoolgirl Maddie Suy also lost her battle with DIPG.

Federal Health Minister Mark Butler described the funding as a “testament to the families impacted by this disease and their tireless efforts”.

“We need bold and innovative research approaches to find treatments and a cure for DIPG. Australia has some of the best researchers in the world in this field, and this funding from the Albanese Government will improve access to clinical trials, giving families renewed hope.”