Dialog Box


Transparency key to helping Aussie kids with DIPG

   Annabelle Potts and her father Adam in Monterray, Mexico 

 Cure Brain Cancer Foundation is acutely aware of the dilemma facing parents of children with Diffuse Intrinsic Pontine Glioma (DIPG) and has been working to find better, more effective treatments for this dreadful disease for many years. With regard to the current news reports about Clinica 0-19 in Mexico, it is not possible for us to recommend that clinic’s approach given that Doctors Siller and Garcia have not yet published any data for critical review about their treatments.

Cure Brain Cancer Foundation implores these doctors to open their clinic to international DIPG experts immediately so that their approach can be shared. Not only could this potentially help other children facing this devastating diagnosis, it will also allow their work to be critically reviewed, adding to the body of knowledge around this rare disease. To do anything else at this point in time does not serve patients’ and families’ best interests. 

To facilitate this, Cure Brain Cancer Foundation is willing to sponsor a recognised DIPG expert to visit the clinic and report back as soon as possible.

Cure Brain Cancer Foundation CEO Michelle Stewart said, “The plight of Australian children like Annabelle Potts, Annabelle Nguyen and Riaa Kulkarni with DIPG is desperately upsetting. As a mother, it breaks my heart to hear the stories of these children and their families heading to Mexico for experimental treatment, which comes at such a high financial and emotional cost. We want to ensure Australians faced with a brain cancer diagnosis have cutting edge experimental options here in Australia.”

Cure Brain Cancer Foundation and the Victorian based Isabella & Marcus Foundation, will also unite to invest $400,000 in a world-class clinical trial for DIPG patients. Both have been working with the very best minds, including Cure Brain Cancer Foundation’s leading Scientific Advisory Committee to identify a suitable trial that will benefit these children. This funding will ensure that Australian children diagnosed with this incredibly rare disease will be able to access promising experimental treatments in Australia, rather than having to travel overseas.

The Foundation is also a member of the DIPG Collaborative, a group of more than 20 international members who pool knowledge, reduce duplication and fund research (more than US$7 million in the last 4 years) to find a breakthrough. With the Collaborative, the Foundation has taken global leadership on research into this rare tumour, which has a such a severe impact on patients and families. In 2019, some of the leading minds in DIPG will meet in Sydney at the DIPG Collaborative Symposium to discuss global progress against the disease, hosted by The Cure Starts Now Australia and Cure Brain Cancer Foundation.

Start-up funding for innovative programs like ZERO Childhood Cancer, provided by the Foundation, also has the potential to benefit children diagnosed with DIPG. 

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