David and Cooper Rhys-Jones

Prader-Willi Syndrome (PWS) is a rare and complex, genetic disorder that affects Chromosome 15. So, we named our fundraising effort, the 15 for 15 Challenge.

One of the more common characteristics of PWS is the development of an insatiable hunger around the age of 2 that 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. This is an incredibly challenging state to live in daily.

To learn more about Prader-Willi Syndrome please visit www.pwsavic.org.au

How will my fundraising efforts and donations support Prader-Willi Syndrome?

In May, the 15 for 15 challenge will raise awareness and funds for Prader-Willi Syndrome. 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 of 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, a partnership between leading health service, teaching and research organisations, 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.

The model will be designed for implementation across all Australian hospitals that care for children with Prader-Willi Syndrome.

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.

Since establishing the 15 for 15 Challenge, together we have raised an incredible $115,000!

Since 2020 funds raised by donations made to the 15 for 15 Challenge have been directed to the State-wide Care Plan. This project is now underway and the collaboration between Prader-Willi Syndrome Association of Victoria, Monash Children’s Hospital, Monash University, Royal Children’s Hospital and Monash Partners is a significant step forward for the Prader-Willi Syndrome Community.

Funds raised since the 2020 campaign have also been utilised to continue the vital work that the PWSA Victoria provides to the Prader-Willi Syndrome community.

15 for 15 Merchandise

Raising Awareness of Prader-Willi Syndrome and our cause is easy when you have the right tools. We have a range of 15 for 15 Challenge designed t-shirts and hoodies available for purchase on the PWSA Victoria Community Store.

Items are limited, so order soon!

Thank you to the following supporters

Join our community and enjoy ongoing help & support.

Visit PWSAVic.org.au

The Prader-Willi Syndrome Association of Victoria (PWSA Victoria) provides vital supports and services to people living with Prader-Willi Syndrome (PWS) including anyone who:

  • cares for a person with Prader-Willi Syndrome;
  • provides physical and emotional support to a person with Prader-Willi Syndrome;
  • offers professional services to a person with Prader-Willi Syndrome; and
  • that has interaction with a person who has Prader-Willi Syndrome
Australian Business Number

Prader-Willi Syndrome Association of Victoria Inc. ABN: 93 836 682 679

Prader-Willi Syndrome Association of Victoria Inc. is endorsed as a Deductible Gift Recipient (DGR) from 01 Jul 2000. 

Australian Charities and Not for Profit

The Prader-Willi Syndrome Association of Victoria Inc. is registered with the Australian Charities and Not-for-profits Commission (ACNC). Details can be found here https://www.acnc.gov.au/charity

Deductible gift recipient status 

DGR Reference Number: 900462951

Donors wishing to claim a deduction for gifts/donations $2 and over should make reference to the Prader-Willi Syndrome Association of Victoria Inc. and our DGR number (900462951) in their payment records.
Further information relating to Gifts and Fundraising can be accessed here. https://www.ato.gov.au/Non-profit/Gifts-and-fundraising/


PWS 15for15 Challenge – Copyright Chris Bain;
PWS 15for15 Challenge Australia – Copyright Chris Bain 2019