Brain Cancer Action Week
If there was ever doubt that one person can make a difference, it was all but gone by the end of Brain Cancer Action Week (BCAW) as Catherine Bullivant discovers.
A string quartet plays as tea is sipped in the dappled sunlight
of Kirribilli House. It is a spectacular Sunday morning. The
harbour is shining as television crews and journalists arrive. Blue
posters line the waters edge, announcing the launch of the
inaugural Brain Cancer Action Week. It is the culmination of hard
work, sleepless nights and the drive of one person to make a
change.
Determined to see brain cancer share the public spotlight with
its more popular cancer cousins, NSWOG Neuro-Oncology member Robyn
Leonard, whose daughter Lucie battled a Grade 3 astrocytoma,
gathered the brain cancer community to propose the idea of a
national 'action' week to the Cancer Council NSW.
So began a collaboration including the Institute's NSWOG
Neuro-oncology and the Australian Genomics and Clinical Outcomes of
High Grade Glioma (AGOG) to highlight the devastating impact of
brain cancer and broaden support for ongoing research funding.
The Week was launched at Kirribilli House by Minister for Health
Nicola Roxon. Using her media background, Robyn successfully nabbed
coverage by national news networks, including channel nine, the ABC
and news limited. Also lending their identity to the cause were
four brave widows - Gail O'Brien (Professor Chris O'Brien),
Marcella Zemanek (Stan Zemanek), Sue Price (political journalist,
Matt Price) and Annette Olle (ABC radio personality, Andrew
Olle).
Television personality Johanna Griggs was the official
ambassador, and spoke at a celebrity luncheon hosted by Marcella
Zemanek. She shared her ambassadorship with Australian Rugby Union
representative Julian Huxley's, who recently returned to the game
following a brain tumour.
With growing media awareness, celebrity
backing and bigger and better plans for 2011, brain cancer finally
made its way into public consciousness.
Huxley was a guest speaker at the Cancer Institute's NSWOG Neuro
Oncology Brain Tumour Support and Education forum for patients and
carers. Over 30 speakers volunteered their time and expertise to
demystify the disease and provide information on all elements of
the patient journey ? including treatment, rehabilitation and
psychosocial support. The day was attended by over 200 people and
for the first time featured a paediatric component, with concurrent
sessions running throughout the day.
Deputy Premier and Minister for Health, Carmel Tebbutt opened
the forum, introducing International Guest speaker Dr Tim
Cloughesy, Director, UCLA Neuro-Oncology Program, who presented the
future of personalised medicine for malignant gliomas and set the
scene for an intense but informative day.
The day finished on a musical high, with radio personality Alan
Jones taking to the microphone in an opera coat to sing with The
Skat Kats, a band of family and friends of babies and children
being treated for brain cancer. He also publicised the forum on his
radio program, yet another arm of publicity for the cause.
With growing media awareness, celebrity backing and bigger and
better plans for 2011, brain cancer finally made its way into
public consciousness. The Week officially ended on Mother's Day, a
fitting testament to a very special mum.
Audio from the Cancer Institute's NSWOG Neuro Oncology Brain
Tumour Support and Education forum will soon be available
online.
To read more about BCAW, visit www.braincanceraction.com.au
Did you know?
- Brain cancer is one of the least understood and most
under-studied of all cancers - it has been described as a 'black
box' disease.
- While survival rates for most cancers have improved over the
past decade, survival rates for brain cancers have not.
- Brain cancer carries the highest financial burden of all the
cancers (high costs to health system, high social burden and high
mortality burden).
- High Grade Glioma (HGG) is the most common malignant brain
cancer.
- HGG is nearly 100% fatal - only 25 per cent of patients are
still alive two years after diagnosis.
- The average survival rate is six months without treatment.
- Brain cancer can affect anyone at any age. It can affect
otherwise healthy adults in the primes of their lives - and is one
of the most common causes of cancer in children (children younger
than 14 years of age may be at higher risk).
- Patients with brain cancer may go from experiencing full health
to a range of incapacitating symptoms (including headaches,
seizures, weakness, memory impairment and speech disturbance)
within months.
- As the cause of brain cancer is unknown, preventative measures
(such as screening) cannot be implemented.
- The speed at which this cancer kills means that it is difficult
to conduct clinical or biological research. In addition, the
relatively low number of patients seen at individual treatment
centres has presented somewhat of a research challenge due to lack
of adequate numbers of study subjects at any one centre.
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