Brainwave Australia was established in 1994 with a
mission to support the treatment and care of children suffering
from brain illnesses and to support the children and their
families from the point of diagnosis onwards. Neuroscience
(brain/spinal disorders) covers a wide range of disorders
including; brain tumours, epilepsy, muscular dystrophy, strokes,
childhood MS, injury through road trauma, ABI’s (Acquired Brain
Injuries) and many more.
While supporting children and their families, Brainwave has also
supported the Royal Children’s Hospital in Melbourne,
contributing in excess of $1million to the Neuroscience
department over the past 12 years. We continue to share close
ties with the Hospital, including our work in helping to develop
the Brainwave Children’s Neuroscience Centre on the 8th Floor,
which was opened in 2005.
The Neurology and Neurosurgery departments of The Children’s
Hospital at Westmead have also been a recipient of Brainwave
funds.
Brainwave Chairman Ian Pyman and
Executive Director Josephine Nicholls presenting cheques
for over $100,000 to Dr Jayne Antony, Paediatric
Neurologist, Department Head T.Y. Nelson Dept. of
Neurology & Neurosurgery, The Children’s at Westmead
Brainwave identified a vacuum in the support available to
children and their families and determined to focus their
activities accordingly and concentrate on the support of the
children, siblings and their parents in coping with these
illnesses. Hence the clear direction of, “Taking Health to
the Community”. It’s about aiding families to get home and
commence the long recovery programme.
This is probably best described in the following example;
Kate has suffered a severe brain illness.
As a result of her long hospital stay (over 4 months) her mother
has had to give up work. Kate will require ongoing care for the
rest of her life. The family was reliant on two incomes and has
two other children to consider. In order to be discharged from
hospital, Kate will require a custom made wheelchair, a pressure
mattress to sleep on at home, a special feeding chair and
bathroom aids. Along with these items Kate’s parents must
purchase a vehicle that will accommodate Kate’s wheelchair and
the house must be modified to also accommodate this……..Who Pays?
Kate can go home now, but not without the long list of aids in
place.
Brainwave Australia is a registered charity with
deductible gift recipient status. It is the only charity in
Australia dealing with this range of peadiatric illness. It now
operates in both Victoria and NSW, and have plans to expand into
other States as time and resources permit.
OUR KIDS
Try to imagine for a moment the terrifying world of a child
dealing with a brain illness/disorder.
When a child suffers a brain disorder, their ability to speak,
think, write and talk can be impaired, sometimes quite severely
and permanently. This is not only devastating for the child, but
has far-reaching effects on the whole family.
Remember the example of Kate’s family?
In Victoria alone, more than 12,000 patients every year
undertake clinical treatment associated with brain cancers and
other brain and nervous system disorders. In New South Wales,
the annual figure climbs past 14,000 and sadly these figures are
closely reflected in the other states.
OUR PURPOSE
Brainwave Australia provides;
Family Support
Home Care Support
Sibling Support
Network Communication
Rehabilitation Support
Mary’s daughter is just 10 months’ old and is
battling an astrocytoma in her spinal cord, an extremely rare
condition for such a young child.
Mary’s request to Brainwave Australia is simple:
“GIVE ME SOMEONE TO TALK TO SO I CAN
LEARN MORE ABOUT THIS ILLNESS AND TALK WITH OTHER PARENTS WHO
HAVE EXPERIENCED THE SAME THING”
This highlights the need to develop a web portal, allowing
families to have contact with one another
As one mother recently said to the Brainwave Australia staff:
“I FEEL AS THOUGH OUR KIDS ARE THE
FORGOTTEN GROUP, SO MANY OTHER CHILDREN’S ILLNESSES GET MAJOR
ATTENTION AND YET NO ONE KNOWS ABOUT US”.
Brainwave is working to change that in the community
OUR SOLUTIONS
Our aim is to support the children and their
families in the transition from hospital to home. Discharge
from hospital more often than not requires planning for
complex Neurology health care needs. Then there is the
rehabilitation process; we support both these processes
whether they are weeks or years.
This support can be in a variety of forms;
Financial support
Support Equipment for home care
Purchasing of rehabilitation equipment
House modifications to suit wheelchairs and
other rehabilitation equipment
Funding for ongoing physio and speech therapy
Whatever the special needs of that family are
to manage their child and his/her illness
Under our business plan, Brainwave Australia
is investigating the development of respite facilities for our
kids in Sydney, Melbourne and Brisbane (a major undertaking),
as well as establishing a web portal for communication and
distribution of information among our families. The Board is
also committed to developing a capital base for Brainwave
Australia to ensure both the longevity of the organisation and
to reduce our dependence on donations from others.
We want to be responsible for our own destiny.
FUNDING AND DONATIONS
Brainwave Australia currently receives no government funding. We
rely entirely on donations from individuals, corporations and
philanthropic trusts, as well as our own event based
fundraising;
AND
there is little or no government funding or support services for
people like Kate, Nicholas, Alex, Jayden, Kirrilee and their
families. (See ‘Our Recipients’ for their stories)
While Brainwave Australia has been able to provide:
financial support to many families and rehabilitation equipment
to many children there is so much more we can achieve:
to give families back some precious time together;
to help families to talk to others facing similar
medical problems
to provide services, such as mobile nurses and
patient transport vehicles, which will enable many of
these kids to stay at home rather than be confined in
hospital for lengthy periods.
Brainwave Australia has many ideas to develop its
business, including philanthropic partnerships with
corporations, employee giving programs, gifts and grants for
specific projects, bequest programs and the establishment of an
annual Brainwave Day.
If you would like to talk to Brainwave Australia about any of
these plans, or simply wish to make a tax deductible donation to
our future work, please contact us;
11 year-old boy has a stroke
at cricket training, requiring resuscitation and emergency
neurosurgery. He now requires ongoing intensive rehabilitation
after it was thought he would not survive..
