Mr Robert:

September is Childhood Cancer Awareness Month, and I rise today to speak about the most deadly and aggressive of all childhood cancers, diffuse intrinsic pontine glioma, which is known as DIPG. It is a rare and fast-growing brain tumour that affects the part of the child's brain responsible for vital functions like breathing, sleeping, bladder control and balance. It is one of the only cancers that still lacks an effective treatment. The average five-year survival rate of children with brain tumours is 74 per cent. However, for children with DIPG, it is isolated to a figure of less than two per cent.

I have been touched by the tragic and heartbreaking story of a family from my electorate, Beau and Terry Kemp, who tragically lost their only son, Ryley, at just eight years of age. Beau describes her son as sweet, kind, funny and cheeky—a normal little boy. That was until their lives were turned upside down when Ryley was diagnosed with DIPG. Ryley bravely battled this awful disease for 14 months, but tragically passed away earlier this year. No family should have to witness their child endure this pain and suffering.

The Kemp's story is truly harrowing, but sadly they are not alone. This is the heartbreaking reality for around 20 Australian children each year who are diagnosed with DIPG. That's why it is vital that funding is prioritised for research into this devastating disease. DIPG research has not received the attention and funding it warrants. Sadly, just $970,000 has been committed to medical research since 2015, just a fraction of what is required to unravel the mysteries of this deadly disease and save precious young lives. During my first week in parliament, I joined Beau and Terry, along with other affected families, in meeting with the shadow minister for health, Senator Anne Ruston. Sadly, the Labor Minister for Health and Aged Care, Mark Butler, was not willing to make time to meet these passionate families. These families are fighting to have their voices heard, to raise awareness and to receive their fair share of funding for medical research, in the hope that fewer Australian children will have to suffer at the hands of this devastating disease. It should not be this hard.

There is some amazing Australian-led research being conducted by Professor David Ziegler of the Children's Cancer Institute and Professor Matt Dun of the University of Newcastle, but unfortunately the government has not provided any funding support to advance this critical research. I make special mention of Professor Dun, who understands firsthand the devastation, having lost his daughter, Josephine, to DIPG in 2019. I commend the work of Professors Dun and Ziegler for their work and dedication to this, and I urge the government to dedicate the vital funding required to advance this critical research and bring us closer to a cure.