Monash Partners is delighted to support the Prader-Willi Syndrome Association of Victoria in their 15 for 15 Challenge running 17 to 31 May.
The self-challenge is named ‘15 for 15’ as Prader-Willi Syndrome (PWS) affects Chromosome 15.
PWS is a rare and complex genetic disorder affecting approximately 400 people in Victoria. One of the more common characteristics of PWS is that children develop an insatiable hunger around the age of two. This hunger lasts a lifetime.
Imagine a hunger that can never be satisfied and the emotional state you find yourself in when ‘hangry’. Feelings of anxiety, exhaustion, anger, frustration and stress plague your body and mind, and your focus on food is heightened. Now imagine trying to participate in everyday life, living with these feelings every minute of every day.
The 15 for 15 challenge encourages participants to set themselves a 15-day challenge such as giving up coffee or walking a certain number of kilometres a day. Funds raised through the challenge will help foster awareness and vital funds to support development of a state-wide, evidence-based model of care.
Monash Partners along with the Department of Paediatrics at Monash University, Monash Children’s Hospital, and the Royal Children’s Hospital, will work to develop a plan to deliver best care to every child, and their families, in Victoria, regardless of where they live.
Monash Partners will support the 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 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.
The Prader-Willi Syndrome Association of Victoria is a volunteer-led Australian charity that has provided much-needed on the ground support to families, professionals and communities to assist those living with PWS since 1979.
Read more at the PWSA Victoria website.