Our Families

OUR FAMILIES

Our followers know – families are why we do what we do.With no treatments available, RUN DIPG are committed to supporting research that changes outcomes for DIPG patients and their families. We have, with the permission and support from our incredible families, shared the stories of DIPG patients and their families, their networks and the incredible events and initiatives they have created.

Families Supported

READ OUR FOUNDERS STORY

RUN DIPG provides hope for future parents that will have a child diagnosed with DIPG. Hope is all we have right now. When Tori was diagnosed there wasn’t any hope, it was only making memories.

Aaron Binnie (DIPG Dad to Victoria)

RUN DIPG has been founded and managed by the most incredible people. Matt and Phoebe know first-hand the devastation of a DIPG diagnosis, but it is for this reason that the support and empathy provided by the organisation are second-to-none. The relationship that my family and I have developed with RUN DIPG as we create Ahlia’s Legacy, is a genuine bond that will continue to strengthen over time.

Tom Buchanan (DIPG Uncle to Ahlia)

Matt, Phoebe and RUN DIPG helped my family understand what was happening to my daughter Evie. RUN DIPG is our charity, and we will advocate for the next family to be devastated by this horrific disease. RUN DIPG is our only charity.

Bridget Poolman (DMG Mum to Evie)

We know there is no other team as committed to finding a cure than the team at RUN DIPG. In 2022 we donated Harper’s tumour cells to RUN DIPG for research. We feel comfort in knowing they are in good hands and will be used to help other children diagnosed with DIPG. We also value knowing how her cells are being used in any research undertaken.

It has been an honour working alongside the team at RUN DIPG in creating awareness and raising funds for vital research. Most importantly, it has allowed us to honour Harper’s legacy. From the very day we connected with Matt, we have felt part of the wider DIPG community.

Lee and Helena Dowdall (DIPG Parents to Harper)

The embodiment of generous contributions, selfless deeds and with progressive research at its heart, RUN DIPG is giving us the hope we so desperately need.

Jennifer Harris (DIPG Mum to Rio)

Learn about Memories in May, for Brain Cancer Awareness Month

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Jemima’s
Story

Jemima Gazley was determined to ensure the future looked brighter for other children diagnosed with the aggressive brain stem cancer that claimed her life last week. The New Zealand teenager inspired a fundraiser that is poised to deliver close to $700,000 to support RUN DIPG.

But even as her loved ones prayed for a miracle, the 15-year-old girl from Wellington was making plans to donate her brain tissue to the cause. She dreamed her gift would help Associate Professor Matt Dun and his team unlock the clues to find a cure for DIPG. That by being part of the answer, the victim may ultimately become the victor.

Ahlia’s
Story

In 2020 Ahlia William’s parents were delivered every parent’s worst nightmare, ‘Your daughter has Diffuse Intrinsic Pontine Glioma (DIPG)’. This is incurable, a ‘go home and make memories’ diagnosis. Ahlia was given 12-18 months, with palliative radiation her only option. This only to buy more time for the memories we were told to go home and create.

Ahlia was destined to have a positive impact on this world, and although she is no longer physically here on earth, we will use her story to raise awareness and funds for RUN DIPG to help create a world with hope that one day there will be a cure, a world which we forever dream existed in 2020.

Rio’s
Story

Riordan “Rio” Harris was a fit, healthy, sport loving, ten-year-old. He enjoyed playing with his dog Leo, jumping on the trampoline (he could do 6 back flips in a row), playing soccer and going to little athletics all with his big brother Jameson. Rio and Jameson were the best of friends and did everything together. In May 2020, Rio was diagnosed with DIPG.

Rio survived for 17 months after being diagnosed, aged twelve, at home in his bedroom surrounded by his Mum, Dad, big brother and Leo his Cavoodle dog. Rain poured down that evening as we said our very last goodbye to our forever to be 12, gorgeous angel. 20 Children per year in Australia are diagnosed with this horrible cancer. I hope one day when a child is diagnosed with DIPG the Doctors can say, “It’s okay, we have a cure for this.”

Harper’s
Story

It was the 25th of March 2019 when we took our beautiful 3-year-old daughter, Harper, to the doctor for a suspected stomach bug. 11 days in ICU later, we received the heartbreaking diagnosis that Harper’s tumour was deemed what the doctors considered the worst of the worst: a tiny handful of children a year get diagnosed with, a stage 4 cancer known as DIPG – this was something nothing could prepare us for.

We had seven months from diagnosis till tragically losing Harper one day before her 4th birthday. DIPG has forever left our family broken. DIPG has taken our beautiful, precious little girl from us and robbed her of a life that was destined to be filled with love and happiness. It has stolen our son Brooklyn of ever having the chance to meet his amazing big sister.

The Dowdall Family

The Dun Lab team welcomed Helena and Lee Dowdall (and their son Brooklyn) to the campus in May 2021. Having lost their daughter Harper to DIPG, the Dowdall Family were keen to get an inside look at how DIPG research may be able to help families that find themselves in a similar position, in the future.

Helena and Lee were able to see the living DIPG models cultured by Matt and the Cancer Signalling Group, including the cell lines grown from Maddie’s and Josephine’s tumour tissue, and have since decided to donate Harper’s biobanked tumour sample to the University of Newcastle research program.

Committed to enhancing DIPG research and the work of RUN DIPG, Helena and Lee hold their annual “Hundred4Harper” fundraiser on Sydney’s Northern Beaches, in honour of their beautiful girl that was taken by DIPG all too soon. Helena and Lee, thank you for taking the time to make the trip to Newcastle and for your ongoing commitment to improving the battle faced by kids and families

Alan and Maddie Suy

If ever there were special guests, Miss Maddie Suy was very much the most ‘special-est’. Diagnosed with DIPG in 2020, Maddie and her father Alan visited The University of Newcastle in March 2021.

The youngest visitor to put Matt through his paces, Maddie was inquisitive and attentive throughout the tour – she was even able to see her own tumour cells growing in the lab! Tissue donations like Maddie’s are instrumental to DIPG research, so it was a highlight for the team to be able to show Alan and Maddie just how much work they’ve made possible with their important decision to be involved.

Alan thank you for taking the time to see the work of Matt and the Cancer Signalling Research Group first-hand, for trusting the Dun Lab with Maddie’s precious tissue donation and for your ongoing advocacy to improve outcomes for kids and families facing DIPG.