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BRAIN TUMOUR ALLIANCE AUSTRALIA (BTAA) INC.
(ABN 97 733 801 179. Incorporated in the ACT: AO4837)
The
only national Australian organisation for the brain tumour patient,
family and caregiver. Freecall number: 1800 857 221
Our
logo:
“The green outline represents
uncertainty. The box is not a
defined square, rather a more fluid and organic shape. The white area
represents the brain. The hand reaching up is crying out in
frustration, pain
and anxiety. The hand reaching down is about to provide some answers,
to ease
the burden and to listen”. |
LINKS
Website
links and contacts
Brain tumours in Australia
Clinical
trials in Australia
Making treatment decisions
To MGMT
test or not?
Review of Avastin literature
Contact us |
Background:
Brain Tumour Alliance Australia (BTAA) is the only national
brain tumour patient and caregiver organisation in Australia.
It was established in late 2008 by a group of brain tumour
patients and current and former caregivers. While welcoming the advice
and input of specialists, BTAA
seeks to represent the brain tumour community from the viewpoint of the
patient, family and caregiver.
Coverage: BTAA is
concerned about all brain
tumours – paediatric and
adult, malignant and so-called benign, and metastatic brain tumours. In
other
words, all tumours of the central nervous system, which includes the
spinal
cord. It believes that brain tumours represent a neglected cancer,
which places enormous challenges on the patient and family and
requires a unique response and a much increased research effort
supported by
the community and governments.
Activities: BTAA provides information
resources to newly diagnosed
patients and their familie. It has established a free call 1800 number
for peer
support (1800 857 221). BTAA can provide trained
consumer representatives
for
brain tumour-relevant advisory bodies. We seek donations to cover the
costs of
the establishment expenses we have incurred (close to $2,000) which will be initially underwritten by
individuals, and our on-going costs to maintain this resource.
We
strongly recommend the following resources
for newly-diagnosed patients and their families: The Primer of Brain
Tumors, published by the American Brain Tumor Association (ABTA), which can
be accessed here and downloaded chapter by chapter (BTAA can also send you a printed copy of the Primer); Al
Musella's Virtual
Trials website which contains a wealth of
information and has a built-in search
facility; the BrainLife
website
which is maintained by Giovanni and Elisabetta Camporeale (who is a
brain tumour patient); Headlines
is a quarterly newsletter produced for brain tumour patients and their
families by Rosemary Cashman for the BC (Canada) Cancer Agency and
contains articles on specific subjects. Locally, we also recommend a
series of Fact
Sheets and Resource Sheets for brain tumour patients, family
and caregivers, developed by the Cancer Institute NSW NSWOG
Neuro-Oncology group, and the booklet Understanding
Brain Tumours, developed by the Cancer Council NSW. Freecall number: The BTAA has a Freecall number: 1800 857 221 (available
only in Australia) where you can speak to someone who knows what it is
like to travel the brain tumour journey.
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SUPPORT
BTAA
Click here to download a membership form in Word to join or donate to BTAA. (HTML version available here).
Click
here to join the BTAA email discussion list.
Click
here to register your interest in the BTAA by send-
ing an email with your contact details.
Click here to download a PDF version of the Rules, Objects and Purposes of BTAA Inc.
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 | BTAA
Secretary Denis Strangman (standing), Vice Chair Susan Pitt (red coat)
and BTAA member MaryAnne Rosier examine a document which seeks to
identify the incidence of depression in brain tumour patients. MaryAnne
Rosier has undertaken a literature search to gather evidence for
special attention to be given to indicators of depression in brain
tumour patients. MaryAnne is undertaking postgraduate studies and is a
volunteer at the local hospice. |
BTAA has announced the winner of its draw to win two tickets to the 2009 Cure for Life Gala Ball, held on Saturday 2nd May, at the Hordern Pavilion, Moore Park, in Sydney.
Robyn
Gifford and her partner Scott, from Victoria, were the lucky winners. Scott was diagnosed and
treated for a brain tumour in 2006. Here is a photo of the masked couple at the Ball. Robyn thanked BTAA for the opportunity to
attend.
Thank you to everyone who entered the draw. |  |
| Letter from Chair: Click here to read the first letter to members from the Chair of BTAA, Matthew D Pitt. |
| International
links:
BTAA will work closely with the International Brain Tumour
Alliance (IBTA) in its promotion of the annual International Brain
Tumour
Awareness Week (1-7 November 2009) and the annual Walk Around the World
for Brain
Tumours (1 January - 7 November, 2009, see www.theibta.org)
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Public policy influence:
BTAA will seek to act as a channel of information to the
proposed Federal Parliamentary brain tumour interest group and Federal
and
State Governments, and will promote awareness about public policy
issues of
concern to the brain tumour community.
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Senator Bilyk,
Centre, (ALP, Tas) meets with the secretary and treasurer of
the
newly formed Brain Tumour Alliance Australia (BTAA). Senator Bilyk was
very
interested in our cause and looks forward to working with our
organisation in
the future.
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New Zealand:
BTAA welcomes the involvement of interested people
from New
Zealand
because much can be done in the area of Trans-Tasman co-operation.
Not a research fund-raiser:
BTAA will not seek to become a fund-raising organisation for
brain tumour research because of a belief that there is now a range of
such
bodies already in existence that are undertaking this role very
successfully.
BTAA will compile a list of charitable organisations and trusts that
meet our
standards and forward it to those who seek a suitable recipient for
bequests
and donations.
Establishment: Because
of the voluntary exclusion of research fund-raising
BTAA will therefore not seek tax deductible status for funds donated to
it. In the initial stages of formation BTAA will seek
registrations of support and interest from individuals in all areas of
the
brain tumour community while determining the most appropriate
membership
structure for official registration as an incorporated association and
for
other purposes.
Consumer representatives:
BTAA will seek to work with other disease-specific cancer
groups and umbrella bodies such as Cancer
Voices Australia (CVA) and will
require all prospective brain tumour consumer representatives to
undertake
training through CVA affiliates or similar health consumer
organisations. BTAA
will support and respect the established position of the various Cancer
Councils.
Clinical trials: BTAA
will seek to work with the pharmaceutical industry,
where appropriate, in ensuring access by more Australian brain tumour
patients
to subsidised and approved therapies, and participation in industry and
investigator-initiated clinical trials. BTAA will seek to offer input
to the
design of such trials so that the best interests of the patient are
always
respected.
Please
join
our efforts to increase brain tumour awareness in
the general, scientific and political communities and our efforts to
provide
ground-level support to those affected by brain tumours by notifying us
of your contact details. (IBTA contact details at
end of this webpage.)
Committee:
Matt Pitt (Chair). Matt is a
graduate
in biochemistry and public servant who has a Juvenile Pilocytic
Astrocytoma. Denis Strangman
(Secretary). Denis is
Chair of the IBTA and former caregiver to his wife, Marg, who had a
Glioblastoma Multiforme brain tumour. Susan
Pitt (Treasurer). Susan is a breast cancer survivor and
trained breast
cancer and Consumers’ Health Forum (CHF) representatives' course
participant and mother of Matt.
Matt Pitt |
Denis Strangman |
Susan Pitt and
grandchildren |
Foundation
supporters –
| Sally
Payne:
Sydney. University lecturer whose sister has an anaplastic astrocytoma.
Sally
represented the IBTA at the scientific meeting of the American Society
of
Clinical Oncology, held in Chicago
in 2008. Sally was a presenter at a Sydney neuroscience nurses' seminar
in 2008 and also represented brain tumour patient and caregiver
interests at a discussion of proposed clinical practice guidelines for
malignant glioma in 2008. |
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Uschi
Fitzpatrick:
Sydney. Former caregiver to husband Donlevy who had a glioblastoma
multiforme
brain
tumour and underwent treatment in Melbourne and Sydney. Uschi
researched
extensively about brain tumours and became knowledgeable about
promising new
therapies being developed overseas. |
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John Carey: Perth. John knew nothing about brain tumours - until his
mother Delys was diagnosed with GBM 4 in 2006. Her amazing courage and humour
inspired him to establish with other patients, family and friends, the Brain
Tumour Association of WA. He is currently Chair of the Association, which has
now been successfully operating for a year. See "Website Links and Contacts".
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Sarah Thompson: Brisbane, Cancer Support Co-ordinator - brain tumour support, Cancer Council, Queensland.
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Liz
and John Emmett: Melbourne.
Liz and John live in Melbourne where John is an official of the Uniting
Church. In this photo
they are looking at one of their grandchildren who was then in the Hospital
special care unit. Their daughter Natasha is a long-term glioblastoma
survivor. Liz has written the story of Natasha's journey here where thousands of
newly-diagnosed patients have read it and obtained hope. |
 | Tara Gent:
Melbourne. Her brother died from a glioblastoma multiforme brain tumour
in 2007 and she is motivated to help BTAA to make it easier for other
families to cope with the challenge of a brain tumour diagnosis. Tara
participated in the IBTA's 2007 and 2008 Walk Around the World for
Brain Tumours. |
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Penny
Bowman: Wellington,
New Zealand.
Penny, with her late husband Dave,
led the fight in NZ for access to the concomitant therapy of
temozolomide and
radiation therapy for newly diagnosed glioblastoma patients. Penny and
Dave
travelled to the world famous brain tumour treatment centre at Duke
University
(USA) and an award winning documentary about their struggles was
screened on NZ
television. New Zealand
residents should join the NZ-based brain tumour discussion group at: http://health.groups.yahoo.com/group/nzbraintumour/
Contact details: danzac@paradise.net.nz,
or via the NZbraintumour Yahoo site.
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| Solidarity symbol: Click
on the image to the right of embroidery thread ready to be woven into a
wrist bracelet which you can wear in solidarity with someone who is
undergoing radiation therapy/chemotherapy as part of their treatment
for a brain tumour. The image is linked to a PDF file of
instructions on how tomake the solidarity symbol. Start wearing
the woven symbol when your friend commences treatment and only
remove it when their treatment has concluded.
Our thanks to a breast cancer advocate who thought up this idea and
uses it to raise funds for her cause. You could do the same. BTAA is
currently developing a list of brain tumour-relevant charities to which
Australian supporters can donate. |  |
Contact
details:
enquiries@btaa.org.au Note:
we offer peer support, not medical advice, and have a Freecall number: 1800 857 221
(available only in Australia) where you can speak to someone who knows
what it is like to travel the brain tumour journey. N.B. the
Freecall number is answered on a person's private number, please
inform the person who answers that you are inquiring about BTAA.
Please consult
your medical
practitioner for medical advice. We are unable to offer financial or
material support.
BTAA
also has its own email
discussion group. To join, visit:
http://health.groups.yahoo.com/group/btaa/
Chair: Matt Pitt. Email: chair@btaa.org.au Vice-Chair: Susan Pitt. Email: vicechair@btaa.org.au Secretary: Denis Strangman Email: secretary@btaa.org.au
Postal: PO
Box 76,
Dickson, ACT, 2602.