Federal government announces up to $20 million toward childhood brain cancer research
A mother whose young daughter died from an aggressive type of brain cancer last year says a “phenomenal” research funding announcement will give other families hope.
The federal government said up to $20 million would be made available over seven years through the Medical Research Future Fund for clinical trials and work to find treatments for childhood brain cancers, including Diffuse Intrinsic Pontine Glioma (DIPG).
Health Minister Mark Butler said research was a “key weapon” in the “unrelenting fight” against DIPG and childhood brain cancer.
“We need bold and innovative approaches to find treatments and a cure,” Mr Butler said.
DIPG is the deadliest childhood cancer and can also strike some adolescents and young adults.
While life expectancy was only nine to 11 months after diagnosis, treatment options have barely changed in decades, with many families told to “go home and make memories”.
Brisbane primary school student Ruby Pringle was six-years-old when she was diagnosed with DIPG in September 2022.
The joyful little girl – described as extremely kind – lived for just five months with the aggressive brain cancer before it claimed her life in March 2023.
Her mother Hannah Pringle said while it came too late for Ruby, the research money was “beyond our dreams”.
“I think it means that we have hope that the future kids have a chance of surviving,” Mrs Pringle said.
She said DIPG didn’t just take the lives of children, it also devastated families.
“It’s scarred our family forever and our little four-year-old Tilly has nightmares and asks if she’s going to go to heaven as well,” she said.
Ten weeks ago Hannah and her husband Andrew had their third daughter, Lottie, who will sadly never get to meet Ruby — who suggested naming any future sisters “Charlottie” before she died.
“I think it’s a really nice way to have Rubes still a part of our family and honour Rubes in that way,” Ms Pringle said.
Mr Butler said a new National Childhood Brain Cancer Clinical Trial Consortium would be established to promote international research collaboration and ensure better access to clinical trials.
“More clinical trials are vital – and Australian children, adolescents and young adults with DIPG and other childhood brain cancers will benefit directly through being involved in a trial,” he said.
The government has also secured access to an experimental medicine being used in some patients with DIPG.
Dordaviprone – also known as ONC201 – will now be available to eligible Australian patients.
Eve Daher’s family has spent more than $110,000 over the past three years importing the medicine for her.
The Sydney girl was diagnosed with DIPG when she was five-and-a-half years old, recently celebrating her eighth birthday and starting grade three at school this week.
Her mother Angie Daher said the announcements were “mind blowing”.
“We hope these investments go to our world-class researchers in Australia to continue making the breakthroughs in understanding the biological make up of DIPG tumours,” Ms Daher said.
“Eve is almost 35 months post diagnosis and the drug combination that she takes has come from the research done by Australian researcher and DIPG dad Professor Matt Dun.”
She said Eve travelled to Canberra last year to help push for DIPG funding.
“This morning she said to me ‘mummy I am so proud of us for achieving this!'”
