Our Research Strategy:
PWRFA has developed a directed and balanced research strategy to materially change life for those living with PWS. In the short-term we seek solutions to improve symptom management that lead to positive developmental and behavioural outcomes for those living with PWS. Longer-term, we are supporting cutting-edge research that is developing treatments to directly target the underlying cause of PWS.
We will achieve this by:
• Fostering deep medical expertise to improve the management of PWS
• Supporting clinical trials by Australian researchers, and promoting Australia as a high-quality PWS clinical trial site(s), thereby facilitating early access to new therapies
• Funding research into breakthrough medical treatments that offer genuine promise and potential.
We believe these breakthroughs are achievable in the near future, not only for future generations but for the current generation of people living with PWS.
“The will and expertise exist to develop a treatment – all that is needed is the funds” – Associate Professor Jeff Craig, Centre for Molecular and Medical Research, School of Medicine, Faculty of Health, Deakin University, and Honorary Senior Research Fellow, Murdoch Children’s Research Institute and member of the PWRFA Board and Scientific Advisory Council.
“I am convinced that targeted biomedical research coupled with disciplined research translation can deliver substantial improvements in quality of life and long-term prospects for people living with Prader-Willi syndrome” – Professor Ian Cooke, former CEO of the Cooperative Research Centre for Mental Health, Professorial Fellow Florey Institute for Neuroscience and Mental Health, PWRFA Acting Chair.
Our Research Process:
PWRFA seeks to identify, nurture and enable novel world-class Australian research in PWS. Potential projects relevant to our mission are taken to our Scientific Advisory Council before being considered by our Board of directors.
Our research strategy is implemented by a team of dedicated individuals, including our Scientific Advisory Council, Board of directors, Research Director, CEO, and volunteers. This team of passionate individuals is driven by a desire to help people with PWS to lead independent, full and happy lives.
PWRFA acts as a central point for building connections across the research community; including scientists, clinicians, companies, government and other PWS organisations. We seek to increase awareness of PWS across the research sector, leading to new and improved programs of work that can grow into self-funding PWS research projects. We support researchers to take the discoveries made in these projects and translate them into real and effective outcomes for families.
Current Projects:
Here is a list of the projects recently completed and in progress as a result of PWRFA’s efforts and funding.
Collectively, these PWRFA research strategies are raising awareness of PWS across critical sectors, including government, pharmaceutical & biotechnology, academic research and in clinical settings.
Call for research projects:
If you are a researcher with a project which meets the aims of our foundation, please contact info@praderwilli.org.au. We give priority to Australian based researchers where possible.
How you can make a difference:
State-of-the-art research is expensive. There are no short cuts or quick fixes. But treatments that can make a difference to PWS are on the horizon.
To reach them we need support from individuals, charitable organisations and business.
Our research and our work isn’t possible without the generosity and goodwill of people from all walks of life, and from all corners of Australia.
Every donation takes us a step closer to identifying and using the best possible treatments to help families whose futures are turned upside-down by a Prader-Willi Syndrome diagnosis.