"If I'd had a stroke, I wouldn't be happy waiting two years for a diagnosis and treatment, by which time the damage would have become permanent", says Professor Nadia Badawi, Macquarie Group Foundation Chair of cerebral palsy and Head of Research with Cerebral Palsy Alliance.
"Well that's what we accept with children with cerebral palsy when early intervention in infancy could re-shape their brains, for example using what's called a motor learning approach, where we train the brain to learn new movements. In many cases we've managed to bring down the age at diagnosis from 19 months to three months using what's called General Movements Assessment in Sydney Neonatal Intensive Care Units",
...explains Cathy Morgan Research Fellow at Cerebral Palsy Alliance. "And this has allowed us to research early interventions such as the motor learning approach."
"It is appalling that while cerebral palsy costs $US40 billion worldwide each year, less than 0.025% or $US10 million dollars was spent worldwide last year on research to find a cure", said Neil Balnaves, whose Foundation is funding the Meeting in Vienna. "That's why this Meeting, where the latest worldwide research on cerebral palsy will be presented, is so important.
"At the Vienna meeting we focussed on early returns for parents and children by accelerating research discoveries through bringing together 45 of the world's best cerebral palsy researchers in Vienna in early July – a quarter of whom are from Australia," explains Neil Balnaves.
For the first time international clinical guidelines on early intervention and early diagnosis came from this meeting and these guidelines were presented by convenor of the Vienna Meeting, Australian Associate Professor Iona Novak (Head of Research at the Cerebral Palsy Alliance ) at the European meeting –European Academy of Childhood Disability in Europe (Vienna 3-5th July).
"My son has already benefited from Australian research," says Tea Boyce mother of 2 year old Genesis. "It used to take months to be sure your child had cerebral palsy but he had what's called General Movements Assessment early in life, which allowed the specialists to give him treatments exactly focused on his needs. Genesis' improvement has been fantastic."
Genesis was born at just 24 weeks gestation weighing only 720 grams. Not long after his birth he suffered haemorrhages on both sides of his brain and it was feared he wouldn't survive. Genesis spent a total of 15 weeks in hospital and was eventually discharged home still on oxygen. Tea and Paul were told that Genesis was likely to have severe neurodevelopmental problems. At about 3 months of age the General Movements Assessment revealed that Genesis was in the high risk group for cerebral palsy and he was referred to a CP Alliance Research Institute early intervention study looking at training movement skills in young infants.
Cerebral palsy was confirmed at 8 months however Genesis progressed well, exceeding expectations and at 12 months surprised his doctors at Growth and Development Clinic . Genesis is now almost 18 months and is crawling and pulling up to stand . Tea said he is now standing on his own for a couple of seconds which is fantastic. "I was so scared when I found out my child had cerebral palsy, and I would have been a 'lost mother' without the Cerebral Palsy Alliance – they put me on the right track for Genesis' progress," Tea Boyce said.
"We've also been trialling a technique adapted from adults with stroke to young infants called Action Observation Training which uses mimicry to get the baby to use their affected arm," says Prof Roslyn Boyd of the University of Queensland. "It is designed to train the injured brain as the infant starts to learn to reach and grasp toys."
"And MRI scans of pre-term babies may allow even earlier diagnosis and greater understanding of the impact of the injury on the developing brain,"says Dr Kerstin Pannek of the University of Queensland and CSIRO who uses the emerging science of ‘connectonomics' to study how neural networks in the brain evolve and in cerebral palsy, go wrong.
"These are just a few of the practical research findings that are already translating into treatments in clinics around Australia," says Rob White, CEO of the Cerebral Palsy Alliance which is partnering with the Balnaves Foundation in the global meeting in Vienna. "We expect lots of things to emerge such as these new guidelines on treatment and diagnosis which we hope will be accepted worldwide."
"It's the third time we've funded this global research meeting on cerebral palsy and the fruits of the first meetings are coming on stream. Now we need to get doctors, physios and nurses in the field to adopt the evidence for early diagnosis and treatment that's emerging," Neil Balnaves said.
"I'm told that parents and doctors used to be very negative about cerebral palsy," Tea Boyce, mother of Genesis said.. "Now there's hope."
About The Balnaves Foundation
Neil Balnaves has worked for over 45 years in the entertainment and media industries. His passion for the arts and medicine led to the establishment of The Balnaves Foundation in 2006. The foundation invests more than $2 million annually in supporting eligible organisations that aim to create a better Australia through education, medicine and the arts with a focus on young people, the disadvantaged and Indigenous communities. For further information visit www.balnavesfoundation.com.
About Cerebral Palsy Alliance Cerebral Palsy Alliance has been supporting children and adults with cerebral palsy in NSW and the ACT for 66 years. We rely on the generosity of the community to help us build a better future for people with cerebral palsy. The Research Foundation of Cerebral Palsy Alliance is committed to funding research to improve the lives of people living with cerebral palsy now, as well as finding ways to prevent and cure cerebral palsy. www.cerebralpalsy.org.au
Background
Cerebral palsy is the most common physical disability in childhood. Despite advances in medicine and care, birth prevalence has remained unchanged for the last 60 years. Now more than ever, there is a need for a coordinated and targeted research approach to finding answers for cerebral palsy.
The facts of cerebral palsy
- Every 15 hours an Australian child is born with cerebral palsy
- 1 in 3 children with cerebral palsy cannot walk
- 1 in 5 children with cerebral palsy cannot talk
- 1 in 2 children with cerebral palsy is in pain
- Cerebral palsy results from damage to the developing brain, usually before birth
- There is no known cure and, for most, the cause is not fully understood
Issued on behalf of Cerebral Palsy Alliance, Australia - Media Contact: Maggie Lanham ph 02 9975 7569 or 0412 281277.
New research explores hidden health risks of hereditary hemochromatosis