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OUR STORY 20202020-06-19T09:49:24+10:00

OUR VISION

We are a charity dedicated to improving outcomes for patients and their families impacted by the deadliest form of childhood cancer – the brainstem cancer, diffuse intrinsic pontine glioma (DIPG) also known as diffuse midline glioma (DMG). It is our mission to raise awareness of this disease, and to generate funding to support the advancement of DIPG/DMG research.

With no treatment options currently available, except palliative radiotherapy, we advocate for the timely and innovative development of anti-DIPG/DMG therapies, and, improvement to current standard-of-care management.

OUR MISSION

RUN DIPG will be recognised as a go-to source of DIPG/DMG information for patients, families and communities alike.

We will contribute to the cost of improving the treatment of DIPG/DMG via the funding of scientific and clinical research as well as equipment to increase the clinical relevance of research. RUN DIPG’s advocacy, collaboration and financial support will make a documented contribution towards improved outcomes for DIPG/DMG patients.

OUR HISTORY

Josephine Laura Dun was diagnosed with DIPG in February 2018, then just two years of age. The daughter of local GP, Dr Phoebe Hindley (Dun), and of Biomedical Scientist, Dr Matt Dun – as well as an adored big sister to George (and soon Harriet), the family found themselves in a tragic, but unique position to make a difference for all patients and families impacted by DIPG.

Matt and Phoebe, together with Josie’s treating oncologists set out to understand everything they could about DIPG/DMG. It soon became clear to Matt as a cancer researcher that very little was known about DIPG/DMG; the mechanisms controlling the tumour’s growth and its ability to avoid normal cell death processes are poorly understood. To address this, Matt’s own cancer research group at the University of Newcastle and Hunter Medical Research Institute (previously leukaemia-focused) set about creating their own program of DIPG/DMG research. Worldwide, the scientific community shared their DIPG/DMG-specific research protocols and even assisted in training Dr Dun’s staff in the techniques required to model DIPG/DMG in a laboratory.

Finding himself somewhat numbed by Josephine’s fatal diagnosis; Matt found focus through running – it was here that he would attempt to piece together the next steps in the DIPG/DMG research puzzle, and to plan the next steps in Josie’s fight against DIPG. Realising that such a rare cancer would never secure the attention (and by proxy, the funding) required to make headway in DIPG/DMG research, he called on the community around them. Internationally, family, friends, colleagues and even other families affected by DIPG began the process of bringing DIPG/DMG to the attention of the world through running, rugby, hiking, cycling, paddling, dancing and swimming in the name of DIPG awareness. With community-based sports events so readily accessible, and providing such a far-reaching platform for advocacy for DIPG/DMG research and awareness, Matt, Phoebe and Josie, together with their closest and most passionate supporters, formalised their efforts to create the charity ‘RUN DIPG’… because you know, ‘it’s tricky’ this brain tumour stuff!

RUN DIPG Ltd was created as a public company and registered with the Australian Charities and Not-for-profits Commission on 5 March 2019. We obtained tax-deductibility registration from the Australian Tax Office in May 2019.

Josephine passed away in December 2019, 22 months post-diagnosis, forever four years old. Unfortunately, most patients do not survive nearly as long; median survival is just 9-10 months post-DIPG diagnosis. In light of this, RUN DIPG is committed to raising awareness, advocating for improved clinical outcomes and financially supporting DIPG/DMG research to reduce the suffering of DIPG patients, their families and the communities supporting those affected by this, the most devastating childhood cancer.

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OUR ADDRESS

PO Box 110
St Leonards NSW 1590

CONTACT US

E | hello@rundipg.org

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