DIPG Clinical Trial in Sydney « Charlie Teo Foundation

DIPG Clinical Trial in Sydney

20 May 2023 – A research update and thank you message from Professor Matt Dun and the University of Newcastle. Hear from a DIPG family about how this research aims to extend the lives of Australian children.

"We extend our thanks to the Charlie Teo Foundation and your donors for supporting our research through grant funding and access to tumour samples from the Charlie Teo Foundation Brain Tumour Bank.

We are immensely grateful to you for supporting the research required to change outcomes for DIPG/DMG patients and their families. This important research would not occur in your absence.

Thank you for your ongoing willingness to see our work succeed." 

– Professor Matt Dun, University of Newcastle, Australia

Here is the team’s latest research paper, published in the journal Cancer Research.

Reporting the mechanisms behind response to ‘ONC201’, and its effect in combination with ‘paxalisib’, the paper details the team’s dedicated efforts to bring promising therapies to clinical trial.

Proudly, they were able to make this possible within just three years, their research underpinning PNOC022 (Combination Therapy for the Treatment of Diffuse Midline Glioma – NCT05009992), opening in the US in 2021, Australia in 2022, and now recruiting in New Zealand, Switzerland, The Netherlands and Israel.

Prof Dun and the University of Newcastle team are currently studying how they may further improve response to ONC201 and paxalisib, as well as the immune and multi-omic studies directly supported by Charlie Teo Foundation. 

Impact of this Research on Families

Alan Suy, DIPG Father

“My daughter Maddie has reached a 30 month milestone this May. It has been 30 months since she was diagnosed with a terminal brain tumour called DIPG.

This rare type of malignant brain cancer statistically affects around 20 children in Australia each year, and the average survival time is between 9-12 months.

"Maddie is still alive due to the love and drive of her family, all DIPG families, her neurosurgeon, incredible local scientists and the work of the Charlie Teo Foundation and its wonderful and dedicated team." - Alan Suy

Maddie is beating the odds. We’ll never know for sure why this is… But what I do know is this…

✨We made the decision for Maddie to be operated on by Dr Charlie Teo to remove the focal part of her tumour.

✨We donated Maddie’s tumour to the Charlie Teo Foundation Brain Tumour Bank for research.

✨Research conducted by Prof Matt Dun’s team here in NSW and funded by the Charlie Teo Foundation and other philanthropic organisations was recently published in the Cancer Research journal. This research and the data that came out of it was instrumental in bringing a promising new therapy for kids with DIPG to clinical trial in just three years. 

✨Maddie was one of the first Australian children to be enrolled in this clinical trial in Sydney. This trial has now launched in 20+ hospitals around the world. 

✨Maddie is still alive due to the love and drive of her family, all DIPG families, her neurosurgeon, incredible local scientists and the work of this foundation and its dedicated team. It takes a tribe of kind-hearted and talented people working together for our Maddie and other kids just like her.

This is not a celebration, it’s just an acknowledgement. While we are grateful to have her in a good state both mentally and physically (no disabilities) and living a quality life like any normal child, we still wake up in the middle of the night fearing the worst could happen at any time. It’s an empty and helpless feeling our DIPG parents often share.

914 days since diagnosis, 1 brain surgery & biopsy, 16 blood tests, 12 MRIs, 40 Radiation Therapy sessions, 1 CT scan, 3 ECGs, 2 ultrasounds, 2 General Anaethetics, 1 lumbar puncture, 10+ cannulas, 60+ appointments, 25 absent days from school, 440+ pills, daily doses of Chinese herbal medicine, vitamins and supplements, countless covid swabs, countless mouth ulcers, bad skin rashes, fevers, and side effects. 

This list may sound exhaustive, but you would do anything for your child to live a happy life, hoping that they will grow up, finish school, work in their dream job, find a partner, get married, start a family… 

Her recent MRI scan returned another positive result – the tumour appears stable! Our daughter is a warrior. She keeps on fighting! She loves going to school, painting and being a big sister to baby Emily born just three months ago. 

We have to stay positive and hope that one day we will find a cure. We just hope that the cure comes in time to save her and stop the suffering of every other child with this terrible disease.” 

– Alan Suy, Maddie’s father