Brain waves

Brain waves

Meet Gabe, an 11-year-old surfer who has AT/RT, a rare and fast-growing cancer.

In 2016, Gabe, an 11-year-old surfer from Avoca, NSW, was vomiting and getting headaches. An MRI revealed his mother’s worst nightmare, a large brain tumour. Surgery removed 50 per cent of the tumour which, when tested, was confirmed as AT/RT, a very rare and fast-growing cancer.

Young Gabe has undergone radiotherapy and is half way through his scheduled chemotherapy. While the hopes and prayers of everyone are with Gabe and his family, brain cancer survival rates remain very low with fewer than 50 per cent surviving their diagnosis.

Dr Nick Gottardo, Co-Head, Brain Tumour Research Programme at Telethon Kids Institute and a recipient of funding through The Kids’ Cancer Project, said brain cancer kills more children in Australia than any other disease.

Survival rates for childhood brain cancer have stagnated at a level well below that of other childhood cancers, such as leukaemia,” he said.

"The marked improvements in survival for childhood leukaemia have come about through a combination of laboratory and clinical research. By applying the same principles to brain cancer we will change the status quo and significantly improve the outcomes of children affected by these dreadful diseases,” said Dr Gottardo.

Statistics published by Cancer Australia state that each year more than 1,600 Australians will be diagnosed with brain cancer and that over 1,300 will die from it. Since 1984, the five-year survival rate of brain cancer has remained virtually unchanged sitting at roughly 20 per cent.

Yet, brain cancer receives less than five per cent of government funding for cancer, putting responsibility onto the community to raise funds for life saving research.

Senate enquiry brings hope

According to the Cancer Council of Australia, increase in survival of breast cancer has improved over the past 30 years to a five-year survival rate of 90 per cent and prostate cancer has increased to 95 per cent. Incredibly positive results. Col Reynolds OAM, founder of The Kids’ Cancer Project provided some insight into why that is the case.

The Government has prioritised funding and research into those types of cancers, and you can see the results. Research works! By learning more about each disease, scientists can find solutions. That’s what we want to emulate with childhood cancers that have low survival rates, including brain cancer,” Mr Reynolds said.

On 29 November 2016 the Senate established a select committee to be known as the Select Committee into Funding for Research into Cancers with Low Survival Rates to inquire and report on the impact of health research funding models on the availability of funding for research into cancers with low survival rates.

By the end of March 2017, over 260 submissions had been received by the enquiry, including two from The Kids’ Cancer Project. The most recent paper highlighted a significant lack of sustainable funding for research, clinical trial infrastructure and access with a large reliance on philanthropic funding. The philosophy of the global childhood cancer community to adopt clinical research as a standard care is the single most important factor contributing to the dramatic improvements in survival rates for children with cancer over the past 40 years.

It's the reason why The Kids’ Cancer Project has committed over $34 million to childhood cancer research over 24 years and have channelled funds into clinical trial initiatives through the Australian and New Zealand Children’s Haematology Oncology Group (ANZCHOG) since 2015.

The Senate will publish their report by 28 November 2017, but it seems the hard work of highlighting the issues is already paying off, certainly the 2017 Federal Government Budget showed steps in the right direction. Read more.

"Large-scale infrastructure programs are entirely appropriate for the Federal Government to invest in,” said Mr Reynolds. “But there are so many more projects the community will need to support so that outcomes are improved for children with brain cancer."

Through the generosity of people all over Australia, The Kids’ Cancer Project have committed funding to the following projects specifically related to childhood brain cancer.

$260,420 from 2016 – 2018 “Novel targets to treat medulloblastoma”
$125,354 from 2016 – 2017 “Improved chemotherapy regimens for medulloblastoma”
$100,000 from 2016 – 2017 “Development of personalised medicine approaches to treat medulloblastoma”
$66,572 from 2015 – 2017 “New therapeutic targets for paediatric medulloblastoma”
$64,562 from 2016 – 2018 “Improving the cure rates of childhood brain cancer"‚Äč

These studies will be continued, extended and will see results through continued community fundraising.

I will never give up,” Mr Reynolds said. “Childhood cancer is a horrid disease and it is my promise that we will keep going until we find a cure.

3 ways you can help kids with brain cancer today

  • Gabe's family have set up a GoFundMe page. You can support him directly by making a donation now.
  • Get involved with Pirate Day. The national fundraising initiative raises money and awareness for research specifically for childhood brain cancer. While the annual dress up day is officially held on 9 June, you can donate anytime. Donate now.
  • Become a regular donor to a charity like The Kids’ Cancer Project.