Australia Drives Meeting Worldwide to Find a Cure for Cerebral Palsy, The Most Common Physical Disability in Childhood
Cerebral palsy costs an estimated $US40 billion worldwide per year to support those affected, yet less than $US5 million worldwide was spent last year on research to find a cure.
Next week, October 18-19, a global meeting in San Francisco, funded by an Australian philanthropist will bring together 25 of the top cerebral palsy researchers in the world to find a platform to make breakthroughs in the causes, prevention and treatment of cerebral palsy.
“In terms of cerebral palsy research, patience is NOT my virtue,” says Fiona Garrity, whose 12 year old daughter Natasha has cerebral palsy. ‘Whilst there have been some research breakthroughs in recent years, so much more needs to be done to really unlock the key to cerebral palsy and make a practical difference to children with CP. This meeting in San Francisco has the potential to be a game changer, which could change the lives of children like Natasha.’
Rob White, CEO of Cerebral Palsy Alliance advised that 25 of the top cerebral palsy researchers from Australia, USA, New Zealand, Sweden, and The Netherlands will come together for the first time ever, to come up with a roadmap for the future co-ordination of CP research and prevention.
“Cerebral palsy is a lifelong physical condition which has a huge impact on individuals and their families,” explains Rob White.
“We in Australia have led the way in searching for the prevention and cure of cerebral palsy. Work in WA and South Australia has suggested maternal viral infections during pregnancy may cause cerebral palsy in some babies, while low birth weight is also a factor. Recent exciting research developments in Adelaide have shown the preventive effect of magnesium sulphate therapy for some women in preterm labour. However, despite these advances, the rates of cerebral palsy remain the same, and there is still a long way to go to find the prevention and cure of CP.
“This summit will identify the gaps in knowledge and critical research priorities,” he said.
“I think it is appalling that such little money is spent on research of what is the most common childhood disability – which lasts a lifetime. And that’s why I’ve supported this global meeting,” says Neil Balnaves, founder of the Balnaves Foundation. “Look, I’m a great believer in medical research and fund a fair bit of it. But I think you have to question the traditional model of medical research into cerebral palsy with individual researchers pursuing their own dreams and ideas, further and further down a tunnel which may or may not lead to daylight.
“In San Francisco, we’ve collected 25 of the world’s leading researchers in this field and intend to get real progress on where cerebral palsy research should be directed,” said Neil Balnaves
“The intent of the meeting is to focus research priorities so philanthropists and research foundations know where to best direct their investment in this critical public health problem,” says Rob White. “Parents want results in their child’s lifetime and we think we can get them by harnessing the immense talent in this field in Australia and around the world,” he said.
About The Balnaves Foundation
The Balnaves Foundation is a private philanthropic organisation which provides philanthropic support to charitable enterprises across Australia. Established by Neil Balnaves in 2006, The Balnaves Foundation disperses over $2 million annually 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 CP now, as well as finding ways to prevent and cure CP. www.cerebralpalsy.org.au
Maggie Lanham: The Balnaves Foundation (02) 9975 7569 or 0412 281277
Jennifer Durante: Cerebral Palsy Alliance (02) 9479 7257 or 0419 802 602
Released on 13 Oct 2011