As the world this month acknowledges International Prader-Willi Syndrome (PWS) Awareness Month – a small group of dedicated Melbourne families are doing their bit to help those families and children who live with PWS around Victoria.
The PWS Association of Victoria, is a volunteer-led Australian charity that has been providing vital on the ground support to families, professionals and communities to assist those living with Prader-Willi Syndrome (PWS) since 1979.
And this month, the Victorian group will be joining forces to raise money for those living with the condition and various Melbourne iconic sites will light up in orange to celebrate International Prader-Willi Syndrome Awareness Day on Friday May 28, 2021- such as The Melbourne Star Observation Wheel and AAMI Park. *Orange is the international colour for PWS
Prader-Willi Syndrome is a lifelong* genetic condition in which several genes on the 15th chromosome are missing or not completely formed, leading to individuals developing insatiable appetites – often referred to as a ‘starvation syndrome’. This leaves families in the unenviable position of having to closely monitor the eating habits of those with the syndrome and in many instances, this necessitates the locking of fridges and food cupboards.
It is a rare and complex non-inherited genetic disorder, affecting approximately 1,500 people nationally and 400 in Victoria. While PWS currently has no known cause or cure, through previous fundraising efforts and research, experts have been able to develop treatments and medications to help ease symptoms of the genetic condition.
Former Carlton premiership player and AFL hard man – David Rhys-Jones – is an Ambassador for the PWS Association of Victoria. His son, Cooper, aged 17 lives with Prader-Willi Syndrome and Rhys-Jones and his young family are a big part of the PWS Victorian Community and actively work with the organisation to raise awareness and much needed funds for the Association.
“Watching your child struggle to take his first steps, speak and eat, to now dealing with a big 16-year-old boy, has been a rollercoaster ride. The Prader -Willi Syndrome Association of Victoria has been with us all the way since Cooper was born. Through their on-going support and the contact with other parents, our family has never felt alone” David Rhys-Jones
The Prader-Willi Syndrome Association of Victoria (PWSA VIC) provides up to date and relevant information to guide families through all stages of the PWS journey and helps them navigate the areas of medical and education assistance as well as the National Disability Insurance Scheme (NDIS). In addition to direct family assistance, PWSA VIC also provides vital on the ground support and information to health care professionals, educators, research and community organisations on how best to care for someone with PWS.
“School was a challenge but The Prader-Willi Syndrome Association of Victoria supported us with training for teachers and workshops for families. They even run a Time-out camp every year to give families like ours some respite. Essentially, their support is invaluable and we are extremely appreciative.” David Rhys-Jones
#15for15challenge takes its name from the actual PWS condition where the 15th chromosome is affected. The Prader-Willi Syndrome Association of Victoria is encouraging people to set their own 15-day challenge and ask family and friends to sponsor them, or better still, join in and post their progress on social media. These self-challenge posts should be fun, creative and interactive to generate a sense of inclusion within each of the participant’s social groups. You can find out more about our #15for15Challenge here.
For this year’s #15for15Challenge, David Rhys-Jones will be interviewing 15 Stars in 15 Days – from footballers to sport personalities and will include candid and naturally funny interviews with stars like Stephen Kernahan and his former nemesis Greg Williams.
Starting from Monday May 17, 2021 Rhys-Jones will be posting a short interview video with each star onto his Facebook page* every day to help raise awareness of PWS amongst the footy community and beyond. The interviews will be fun, candid and confronting like Rhys himself.
“By taking the #15for15challenge you can show your support and help The Prader-Willi Syndrome Association of Victoria continue their essential work of continuing research and ensure families of people with PWS continue to receive the vital support they need”, said David Rhys-Jones.
The 15 for 15 challenge will raise awareness and funds for Prader-Willi Syndrome and money raised will assist the Department of Paediatrics at Monash University to develop a desperately needed state-wide, evidence-based model of care for children with Prader-Willi Syndrome.
The project will be led by Professor Katrina Williams at the Department of Paediatrics at Monash University in close consultation with Associate Professor Tom Connell from the Royal Children’s Hospital. Monash Partners Academic Health Science Centre (link to www.monashpartners.org.au), a partnership between leading health service, teaching and research organisations focused on innovating for better health, will support the state-wide plan by working with all stakeholders, including children, families, carers and front-line clinicians, to identify and prioritise elements of best care. The elements that will be prioritised include specific interventions and supports, models of care, location of care and key principles of care.
The program will be developed for implementation at both major Victorian paediatric hospitals (Monash Children’s Hospital and the Royal Children’s Hospital) with regional links and is designed for implementation across all Australian hospitals that care for children with Prader-Willi Syndrome.
Monash Partners Academic Health Science Centre’s Chief Operating Officer, Dr Angela Jones is delighted to support the Prader Willi Syndrome Association of Victoria in their mission to empower those living with Prader Willi Syndrome.
“This collaboration will enable us to deliver and support the best of care to every child, and their families in Victoria regardless of where they live. We look forward to providing evidence based effective intervention, provisions and ways of working needed to decide best care activities while working in partnership with parents and carers in the implementation of the state-wide plan.” Dr Angela Jones
Funds will also be directed to the Prader-Willi Syndrome Association of Victoria (PWSA Victoria) to ensure continuity and growth of the vital supports and services we provide to our community.
The Prader-Willi Syndrome Association of Victoria encourages people to take up the 15-day self-challenge to help continue to break down barriers and create a world where everyone with PWS has access to the right tools, to enable them to live a full and inclusive life.
For more information head to Prader- Willi Syndrome Association Victoria’s website below:
Donation Givenow link below: