Victorians to continue to benefit from local services

Thank you to our members for the ongoing support you’ve shown the Prader-Willi Syndrome Association of Victoria board over the years and the incredible support you’ve shown to each other, especially during these incredibly difficult and uncertain times.

I’m sure the current COVID 19 pandemic has changed the way our families live, and Isolation has presented you with a range of new challenges on top of all that you already endure. I see the support we are all providing one another on our social media forums, and I’m so glad that we have each other. Our community is like no other, and I am incredibly proud of how our community continue to lift each other’s spirits during difficult times.

In April 2020, the PWSA Victoria held a Special General Meeting of our members to discuss the Amalgamation journey and allow our members to decide on the future direction of the PWSA Victoria and how our local community will continue to be supported.

It was unanimously agreed, by our members, that their needs are best served by the Prader-Willi Syndrome Association of Victoria remaining an independent Association and therefore the Prader-Willi Syndrome Association of Victoria has withdrawn from its current pursuit of an amalgamation with Prader-Willi Syndrome Australia Ltd.

The Prader-Willi Syndrome Association of Victoria will continue to take every opportunity to collaborate with the Prader-Willi Syndrome Australia on projects that are mutually beneficial to all Australians, as it has done to date.

Moving forward, our goal is to continue to provide the essential services and supports that no other Association that support our community is offering. We will continue to do this for as long as our community needs us to do so.

We are excited to present you with the logo/branding that we will be using moving forward.

When liaising with Robyn Maguire (who is responsible for the PWSA Victoria branding) about adding a point of difference to our current logo and give us a fresh new feel, we wanted to ensure that the logo represented Victoria and our community. Robyn decided that an addition of a new colour to refresh our logo would be the best option for now, and an accent of pink would be included. The shade of pink is reflective of the Epicaris Impressa, which is the floral emblem of Victoria. The ‘reference to ‘Vic’ was also extended to ‘Victoria’.

“pink is undeniably a happy and uplifting colour and considering the PWSA Victoria provides a sense of hope, community support and happiness to our community, by lifting them up in what is possibly the worst time of their lives, this is perfect”.

Robyn Maguire

We agree that this colour is more than fit for purpose.

Besides working on our branding, the past few months have been a very productive time for the PWSA Victoria. We have been working hard in the background on projects and initiatives that will help us to grow and change with the times. These initiatives will ensure every one of our families has access to the vital, on the ground supports and services that are needed by our community. 

There are many benefits to being a member of the PWSA Victoria, and some recent projects that have been added to our suite of benefits now include:

  • PWSA Victoria Website – We have been hard at work on the new PWSA Victoria website, which we hope to be the Prader-Willi Syndrome information hub here in Australia. This website will be updated regularly and we encourage our members and community to contribute with ideas to expand on the information provided. Please note our new website address – www.pwsavic.org.au
  • EPA Assist – PWSA Vic Community Assistance Program – A FREE Professional dedicated counselling service for all ‘PWSA Victoria Family’ members (entire family including parents and siblings) and ‘PWSA Victoria Friends of the Association’ members. Information regarding how to access this program was provided to our members via email. If you have not received this communication, please contact us as soon as possible.
  • Information brochures – These new information brochures will compliment our new website and will allow us to share more up to date relevant information with the broader community.
  • 15 for 15 Challenge – Our biggest Awareness and Fundraising campaign of the year is the 15 for 15 Challenge. We have been working hard in the background to secure media coverage and greater exposure this year – Watch this space and remember to join the Challenge!

The PWSA Victoria has always been a leader in Australia of supports and services that have and will continue to impact the future of people living with Prader-Willi Syndrome. Now that our community has provided us with a clear direction, we will continue to do what we do best. The PWSA Victoria will work towards creating a world where people with Prader-Willi Syndrome live a full and inclusive life by empowering our community through support, education, advocacy and awareness.

The PWSA Victoria is an organisation that consists mainly of parents and individuals, with no specific expertise, other than having a passion or a drive to help/support the Prader-Willi Syndrome community. If you think you can help in any way, please feel free to contact me at any time. No matter where you live, we are always seeking volunteers to help.

Please continue to look after yourselves, stay safe and remember that there are always supports and services available to help you through the most difficult of times. If you need some assistance, please do not hesitate to contact the PWSA Victoria at any time.

Renee Di Genova
President | Prader-Willi Syndrome Association of Victoria Inc.

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.