Funding plea for $21 million to double DIPG child brain cancer survival rates

Australian researchers say they are “on the cusp” of major advances in battling the “monster” brain cancer that kills 20 to 25 Aussie kids each year.

Labor MP and pediatrician Mike Freelander says Australian researchers are “on the cusp” of major advances in battling the “monster” brain cancer that kills 20 to 25 Aussie kids each year - and is confident the federal Health Minister will find the funds to help them give grieving parents hope.

Politicians on both sides of government have met with parents who have lost sons and daughters to the aggressive childhood cancer DIPG as well as researchers.

The researchers, including Prof Matt Dun and Prof David Ziegler, say $21 million could help them double survival rates for DIPG in the next five years.

Dr Freelander said he was sure the Minister would “do everything he can” to find funding while balancing the needs of all cancer research.

“I’m a pediatrician, so I have looked after these kids. It is pretty terrible watching what happens to them,” Dr Freelander said.

“The whole history up until now is we really haven’t had options for treatments that work, other than radiation therapy that doesn’t change the prognosis that much and they die a horrible death.”

Maddy Suy, who has a an aggressive brain tumour, on a Disney cruise.

“We want to do whatever we can in the modern world and we now have tools that will give us the opportunity to provide treatment that I’m sure will give us the opportunity to improve prognosis in the not too distant future.”

Dr Freelander co-chairs the Parliamentary Friends of Childhood Cancer Cure with Nationals MP Anne Webster who is calling on the Health Minister to act now.

“I can’t understand when it’s such an awful disease with no cures around the world yet in Australia with Professor Matt Dun there is so much to hope for and they need funding,” Ms Webster said.

“The fact Australian researchers have received $124 million for leukaemia research over past five to six years is why they are streets ahead in terms of cures and treatments, and here we are with a disease that nobody in the world has cures for ... yet we can’t get the funding.”

She urged the Minister to “get it right”.

“We are here now, the right decision needs to be made and that’s to fund this research,” she said.

Opposition health spokeswoman Senator Anne Ruston told the Saturday Telegraph she would “ensure that if this Government hasn’t adequately acted on the DIPG request, that we would”.

Maddy Suy on a Disney cruise.

“I have had the privilege of meeting with the incredibly brave parents whose heartbreaking stories and advocacy for more research about DIPG is remarkable,” the said.

“Groundbreaking and dedicated researchers like Professor Matt Dun must be supported which is why Fadden MP, Cameron Caldwell and I wrote to the Health Minister asking him to consider opening a new MRFF grant stream for this research.

“Although we support the government’s $700,000 announcement for DIPG research, which was made in November, there is more that can be done.

“The Opposition remains absolutely committed to supporting families who have a child with DIPG, or have tragically lost a child to DIPG and will continue to advocate for more support in this space.”

Federal Health Minister Mark Butler said he would “consider his options” after “productive” meetings with researchers and family members.

Terry and Beau Kemp from Australian DIPG families.

Mr Butler has heard from parents, including Angie Sari-Daher, Tamer Daher, Hanna Pringle, and Beau and Terry Kemp, who founded the advocacy group Australian DIPG families.

The group has presented the government with a detailed submission for funding.

In December last year they even pleaded with Prime Minister Anthony Albanese’s partner Jodie Hayden - an ambassador for childhood cancer charity RedKite - for her to intervene and urge the government to act. To date she has not responded.

Since the Sunday Telegraph launched the Maddy’s Wish campaign, in the support of the families’ fight for funding, several of the children have sadly deteriorated.

One little nine-year-old Maddy Suy, is busy living life to the fullest despite her worsening symptoms.

Just home from a four-day Disney Cruise with her family, Maddy got to do Karaoke, meet the ship’s captain, mingle with all her Disney favourites and dress up as a princess.