Touchstone Autumn 2013 - Cerebral Palsy League

What's New
Meet our Youth
Ambassadors
Now and again you meet
someone inspirational: someone
whose approach to life makes
you feel determined to make the
most of your own.
The Cerebral Palsy League has
just appointed six such young
people who have inspired us with
their determination to live life to
its full potential as our inaugural
Youth Ambassadors for 2013.
The Ambassadors were formally
introduced at the Supporters’
Soiree on 10 December 2012.
Angela Tillmanns said the group
of young people were selected
because they represented our
vision of an inclusive society for
all people, and because they
proudly validated that having
cerebral palsy did not have to be
a barrier to leading a fulfilling life.
“As young people living with
cerebral palsy, their stories will
serve as an inspiration to many
others,” Angela said.
“Ambassadors are very
important to the Cerebral Palsy
League, playing a vital role in
building understanding about
cerebral palsy, helping to raise
funds for the organisation and
its clients and raising awareness
of the work we do in schools,
homes and communities across
Queensland,” she said.
“In return, we hope to enrich
their lives through participation
in the program. In particular,
we hope it will assist them to
prepare for a successful future in
their chosen field, perhaps even
as a public figure.”
“I’m really honoured to be a
Youth Ambassador; I think this
is an incredible opportunity
to show people that cerebral
palsy is not a limitation and that
people with cerebral palsy can
still do incredible things,” said
18 year old Youth Ambassador
Rachael Dodds.
The Ambassador role includes
participating in media interviews,
speaking at or attending special
events and sharing their personal
story.
The newly appointed
Ambassadors recently prepared
for their new roles with a oneday
media training session at
the Cerebral Palsy League’s New
Farm office.
Meet our Youth Ambassadors
Rowan Crothers, 15
National swimming record holder,
Australian swim team member and
aspiring Paralympian
Bridie McKim, 15
Queensland Theatre Company Youth
actor participant and aspiring actor
Jarrod Larkins-Law, 19
Australian Paralympic Footballer
Rachael Dodds, 18
Australian Paralympic Athlete and
university student
Rob Christie, 15
Australian Paralympic Footballer
Jared Eiby, 21
Australian Paralympic Footballer
Photo (top left): Cerebral
Palsy League Youth
Ambassadors (back L-R)
Bridie McKim, Jarrod
Eiby, Rowan Crothers,
Robbie Christie, Jared
Larkins-Law with CPL
Board Director Simone
Fraser (front)
Photo (bottom): Youth
Ambassador and
Paralympian Rachael
Dodds
Greater understanding of the rates,
risk factors and characteristics
of cerebral palsy is a step closer
thanks to the release of the most
comprehensive research report into
cerebral palsy in Queensland.
The report, released in late
December 2012 by the Queensland
Cerebral Palsy Register, details
distribution, classification, severity
and known risk factors for people
in Queensland with cerebral palsy,
extracted from data spanning a
decade.
According to Queensland Cerebral
Palsy Register Manager, Michael
deLacey, the report is the most
comprehensive ever produced into
cerebral palsy in Queensland, laying
a solid foundation for important
future research.
“This report is the first of its kind in
Queensland and is based on data
from Queenslanders with cerebral
palsy born between 1 January 1996
and 31 December 2005.
What's New
QLD cerebral palsy data
lays path for future research
key findings
• 57% of all children with
cerebral palsy were male
• 49.1% of all children with
cerebral palsy were born
pre-term. Children who
were born before 28 weeks
had 33 times the rate of
cerebral palsy compared
to children who were born
between 37 and 41 weeks
• 46.4% of all children with
cerebral palsy were born
with a birth weight less than
2500g. Children who were
born with a birth weight
Risk factors
• The rate of cerebral palsy in
Queensland is 1.6 per 1,000
live births
• 83% had spastic motor type
cerebral palsy
• 55% were able to walk
independently and manage
stairs and rough surfaces
• 28% could not walk
functionally or would not
walk at all
“It provides valuable insights into
rates, risk factors and characteristics
of cerebral palsy, allowing us to
make sense of how cerebral palsy
is being presented in children and
enabling us to predict what services
they will require in the future.”
CEO of the Cerebral Palsy League
Angela Tillmanns welcomed the
report and explained the vital need
for research to better understand
the condition.
“Every 14 hours a child is born who
will be diagnosed with cerebral
palsy,” she said.
“Currently there is no cure or prebirth
test, but through initiatives
such as the Queensland Cerebral
Palsy Register we can better
work with researchers and health
practitioners to plan and deliver the
support that people with cerebral
palsy need,” Angela said.
of less than 1500g had 32
times the rate of cerebral
palsy compared to children
who were born weighing
more than 2500g
• 5.7% of children with
cerebral palsy were from a
multiple birth
• 6.0% of children with
cerebral palsy were born
to mothers who identified
as Aboriginal or both
Aboriginal and Torres Strait
Islander
• 13% had some hearing
impairment with 3.1% being
bilaterally deaf
• 30% had epilepsy by five
years of age
• 39.3% had no/will probably
have no intellectual
impairment
• 31.4% had moderate
to severe intellectual
impairment
4 Touchstone Autumn 2013
Touchstone Autumn 2013
5