An Adult living with PWS appointed to the PWSA Victoria Board

During the course of 2022 and the development of the Mentor Program, it became very apparent to the PWSA Victoria Board that the adult population within our community should be given a formal opportunity to share their opinions, help work towards our vision and be part of our mission, as it is the people with Prader-Willi Syndrome who are at the heart of everything that we do.

OUR VISION: A world where people with Prader-Willi Syndrome lead a full and inclusive life

OUR MISSION: Empowering those living with PWS through support, education, advocacy and awareness.

The PWSA Victoria is very proud to announce that at our recent Annual General Meeting, Timoth Elson (Tim) was elected to join the PWSA Victoria Board as an ordinary member. Tim is very excited to be taking on this role and is very proud to have been nominated by his peers.

“I have joined the PWSA Victoria board to support people with PWS now and in the near future”

Timothy Elson (Ordinary Member)

Following our Annual General Meeting, the PWSA Victoria held its Strategic Planning Weekend. The theme for the weekend was Dream BIG – no dream is too big!

Before the Strategic Planning weekend, Tim showed pride in his leadership role by initiating discussions with others in the community about what changes the PWSA Victoria can implement in the organisation and for the community over the next few years.

Tim gathered feedback from the adult community and provided feedback to the team about where changes could occur and what changes should occur. It soon became apparent that we as an organisation have inadvertently overlooked the capability and many of the needs of our adult community. Tim shared some great ideas that he has for the future of PWSA Victoria, and these ideas have been included in our Strategic Plan, which will be shared in the coming months.

The 2022/2023 PWSA Victoria Board – [From Left to Right] Dean McIntyre (Treasurer), Katie Albanis (Ordinary Member), Sarah Rees (Vice President), Kurstie Jenkins (Ordinary Member, Nick Healy (Secretary), Renee Zilm (President), Timothy Elson (Ordinary Member), Neil Gumley (Ordinary Member)

“This is a very exciting time for people living with PWS. To have Tim providing his voice and direction to the Board as to where we can do better and help people living with PWS in a meaningful way is really important. I’m so proud of the efforts Tim has made already and I can see that Tim’s contributions to the Board will be impactful and I have no doubt that our community will be better served as a result of him joining us.”

Renee Zilm (President of the PWSA Victoria)

Opening a position on the PWSA Victoria board for Tim to join came about as a result of the work that PWSA Victoria began last year in developing the Mentor Program. In developing and initiating the program we realised that adults with PWS are essential to our community. Formally adding their voice to the organisation signifies our commitment to creating a world where people with Prader-Willi Syndrome lead a full and inclusive life.

Michelle Alford, the Mentor Program Project Manager and Facilitator, will support Tim in his position. The PWSA Victoria board will be heavily guided by Michelle to ensure Tim’s position on the board is inclusive and valued. Michelle has extensive experience in working with adults with Prader-Willi Syndrome.

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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.