PWSA Vic Mentor Pilot Program

Earlier in 2020, the Prader-Willi Syndrome Association Victoria (PWSA Vic) received an Information, Linkages and Capability Building (ILC) grant from NDIA  to develop a Mentor Program.

The Mentor program that we are developing, which we have named ‘Empowered Voices’ aims to provide Adults (16 years and over) with Prader-Willi Syndrome an opportunity to become more involved in our community. While assisting and encouraging their younger peers. Participants in the Empowered Voices PWSA Victoria Mentor Program will also build self-esteem.

Teamed with a trusted carer, our pilot group will be guided by a project manager and facilitator who has experience in working with people with Prader-Willi Syndrome. The facilitator and project manager will assist us in creating a program that will take into account the many factors that will be required to build this program that inexperienced individuals may overlook.

As an introduction, the pilot mentor program will begin at the PWSA Victoria Time Out Camp where Mentors can help with certain aspects of the camp and assist attendees to feel welcome and included. The project manager will meet with the mentors before the camp (via zoom) to introduce each other and explain the program, responsibilities and benefits.

The adults with Prader-Willi Syndrome are an essential part of our community, and through this project, we want to help them discover their true value and benefit to all their peers living with Prader-Willi Syndrome.

Our ultimate goal is to give people with Prader-Willi an opportunity to join our Association as the voice of those living with Prade-Willi Syndrome. This will help us understand what is important to them and help us plan for our future.

If you are interested in becoming a Mentor or know of an adult with Prader Willi Syndrome who might enjoy this program and feel that they would like to contribute, please register your interest by completing the attached form before the 31st of August 2021.


Prader-Willi Syndrome (PWS) is a rare, complex, unique, life-threatening multistage genetic disorder which affects 1 in 15,000 births and results in an abnormality of chromosome 15. PWS can have a significant impact on behaviour, learning, mental and physical health, community inclusion and social relationships. People with PWS exhibit high anxiety, complex and challenging behaviours and cognitive dysfunction throughout their lives. PWS is a spectrum disability, and the degrees of visual abnormality varies immensely. Many people with PWS also have psychiatric problems and autistic characteristics. A defining characteristic of PWS is hyperphagia, or a compulsion to eat.  For more information visit www.pwsavic.org.au

Prader-Willi Syndrome Association of Victoria (PWSA Victoria) is a volunteer lead ACNC registered Australian Charity, with many volunteers having lived experience. Their role is to work closely with organisations around the world, whose vision and purpose align with their own, to ensure their local PWS community is well supported, while researchers around the world work hard to find a cure and viable treatments. The PWSA Victoria’s aim is to 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, please visit www.pwsavic.org.au

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Article By Renee Zilm

Renee excels in enhancing business operations by refining processes, ensuring organisations function with greater efficiency, effectiveness, and strategic insight. Beyond her professional expertise, Renee is a mother to four children. Her life took a poignant turn when her second youngest child was diagnosed with Prader-Willi Syndrome shortly after birth. Embracing this challenge with grace, Renee now dedicates her time to caring for her son while also committing herself wholeheartedly to her role as President of the Prader-Willi Syndrome Association of Victoria.

Ever since her son Harvey’s diagnosis, Renee has been a force of change, initiating and steering innovative programs and services designed to empower individuals with Prader-Willi Syndrome. Renee is deeply invested in the tenets of social justice and inclusion, driven by the conviction that individuals with disabilities deserve equitable access to support and resources necessary for a full and inclusive life. Her profound dedication to her work and her family reflects an overarching mission to ensure that every individual with disabilities can thrive in a supportive and inclusive society.