13 November 2024

 

BRAIN Tumour Alliance Australia (BTAA), who is hosting the Head to the Hill 2024 event, said that this important gathering will bring together more than 200 patients, carers, and advocates to raise awareness of the critical need for increased brain tumour research and improved patient outcomes.

 

More than 2000 pairs of shoes and two hundred patient impact statements will be on display to represent the lives lost to brain tumours and those recently diagnosed. This moving tribute highlights the devastating impact on individuals, families, and communities.

 

Craig Cardinal, Chair of BTAA, said, “We are ‘Heading to the Hill’ to demand better outcomes for brain cancer patients. Despite advances in treatment for other cancers, survival rates for brain cancer remain shockingly low. Our event is a call to action for policy change, more funding for research, and greater support for families affected by this devastating disease.

 

“The display of little shoes in Parliament’s courtyards will be a poignant reminder of the children we lose to brain cancer every year,” said Cardinal. “Brain cancer remains an underfunded, under-recognised issue—this event aims to change that.

 

“In parallel for a call to better funding for research, there is a significant need for funding of national brain cancer survivorship supports. Little to no funding has ever been provided nationally to address critical issues such as dedicated brain cancer nurse navigators that support patients and families through complex and challenging treatment and support pathways.”

 

Guest speakers at the event will be:

 

• The Hon Ged Kearney MP, Assistant Minister for Health and Ageing, who will speak at 10:00;

 

• Senator Catryna Bilyk will follow, with additional patient representatives sharing their personal stories including Gale O’Brien, patient advocate, and Chris O'Brien from Lifehouse; and

 

• 25 Members of Parliament and Senators will be in attendance and all major Australian Brain Tumour Organisations.

 

The Brain Tumour Alliance Australia (BTAA) is a leading advocacy and support organisation dedicated to improving the lives of brain tumour patients and their families.

 

BTAA runs support groups, patient forums, and conferences nationwide, as well as a 24/7 patient support line. Through education, research collaboration, and policy advocacy, BTAA is committed to raising awareness and driving change for brain tumour patients.

 

In 2022 the BTAA established the Australian Brain Tumour Collaborative Group, a peak body of the major brain tumour support, research and medical bodies to work together for improved brain tumour outcomes. The BTAA is a wholly patient, family and carer volunteer run organisation that depends of the generous donations of the public.

 

The human factor

 

Ann, a young child just starting kindergarten, went to hospital simply because of a sore hand. She had her whole life ahead of her, but four letters abruptly ended her life - DIPG.

 

Diffuse Intrinsic Pontine Glioma (DIPG) is an aggressive type of childhood cancer that forms in the brainstem. They are very rare and almost always occur in the pediatric population.

 

Ann's mother said, "I I can vividly recall the look in the doctor's eyes as he took us into 'the room'. The look on the nurses faces as they came in to sit with Ann when we had to go for the talk."

 

Five different doctors spoke with Ann's parents the next day but there was no positive prognosis. "When I saw a doctor outside our room crying in the hallway, it was the moment my heart sank."

 

For Ann's mother it was a moment that she will never forget - telling her mother that her first and only grandchild had a tumour on the brain. "The fear in her eyes," she said. "The world stopped for me that day but I could see the world continuing around me."

 

Ann's parents were told to go home and make memories. But how do you cram a lifetime of making memories with your only child into a few months?

 

"Picture living 32.5 months as though they are your last days," Ann's mother said.

 

"Every day matters and every day becomes a new adventure all while feeling your heart has been ripped out of your chest.

 

"Ann was our miracle baby and she continues to be our miracle."

 

Diagnosed at five-and-half-years-old with terminal cancer, Ann's parents have not long ago celebrated her eighth birthday.

 

Ann's mother asked her husband what her purpose was and he said “to make Ann a unicorn."

 

"That is my wish now," Ann's mother said. "To help turn my miracle girl into a unicorn so that the letters said to us 32.5 months ago no longer mean go home and make memories."

 

DIPG underfunded by the Australian government and, since 2015, only $970,000 has been allocated by the Federal Government for research.

 

The trial that Ann is on is funded because of grieving parents, which has allowed researchers to make breakthroughs. Imagine how many more breakthroughs could happen if the deadliest of all childhood cancers was funded by the Australian government!

 

Key Facts:

 

Brain cancer is the leading cause of cancer death in Australians under 40 and the biggest killer of children from any disease.

 

Survival rates for brain cancer have stagnated for over 30 years, with the 5-year survival rate for glioblastoma, the most common form of brain cancer, at just 5%. By comparison, breast cancer survival rates have improved by 72%.

 

Every year, 1,896 Australians are diagnosed with brain tumours, and 1,528 die from the disease. The economic cost of brain cancer is the highest per person of any cancer, particularly for young people whose lives are severely impacted during their prime years. (Cancer Australia 2024)

 

Event details:

 

• When: Wednesday, 20 November 2024

 

• Time: 8:00 AM – 12:00 PM

 

• Where: Australian Parliament House Courtyards, 28K & J

 

See more at Brain Tumour Alliance Australia.

 

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