Finding Purpose and Belonging

The Vital Role of PWSA Victoria in Phillip’s Journey

In a world where scientific research tirelessly seeks answers, the Prader-Willi Syndrome Association of Victoria (PWSA Victoria) emerges as a beacon of hope, not just for the future, but for the present. It’s a story best illustrated through the life of Phillip, whose journey with Prader-Willi Syndrome (PWS) underscored the profound impact of community, support, and understanding—facets of life that PWSA Victoria champions tirelessly.

Phillip’s early years were defined by the challenges of PWS, a condition diagnosed when he was just two and a half. His childhood in Central Queensland was marked by isolation and very limited support. His family and medical specialists navigated through uncertainties, relying on sparse medical knowledge from overseas as not much information was readily available in Australia at the time.

During his time in Queensland, Phillip struggled to connect with others on a personal level, as there was a general lack of understanding and acceptance of Prader-Willi Syndrome and the daily challenges he faced. It wasn’t until his family decided to move to Victoria during Phillip’s adult years that his life took a remarkable turn.

In Victoria, the well-established Prader-Willi Syndrome community has been instrumental in providing a support system for families. This environment meant that upon moving, Phillip and his family found themselves in a more nurturing and informed setting compared to their earlier experiences in Queensland.

The availability of resources, information, and specialised support in Victoria significantly enhanced Phillip’s quality of life. However, living in a small Victorian town before the advent of the technology and internet we take for granted today posed its own challenges. Despite the supportive community available to him, the lack of modern connectivity limited Phillip’s opportunities to engage with others facing similar journeys.

It wasn’t until age 36, Phillip truly experienced the transformative power of community for the first time through PWSA Victoria’s first community Camp. Whilst the Association had provided other opportunities for Peer Support events, due to Phillip’s location in country Victoria, these smaller events were often difficult for the family and Phillip to attend.

So, this first camp was far from being just a gathering for Phillip, this camp became the pinnacle of his year. This was a space where he found not only acceptance but belonging. It was here, amidst peers and through shared experiences, that Phillip’s life was imbued with a sense of purpose and friendship.

The camp, particularly, offered him a sanctuary to connect, celebrate his passions, and build up his courage to engage in activities like the flying fox, which symbolised his journey towards independence and resiliance.

Having spent over 30 years feeling different, misunderstood, and isolated in his small local community, the Time Out Camp offered Phillip a unique opportunity to connect with others like him.

In speaking to others within the PWS Community, Phillip described the camp as a safe space where

“I can just be myself”.

Following his first Camp experience, Phillip formed friendships unlike any he had experienced before. Meeting his best friend Tim, the two became a life-line for each other, supporting each other through their ups and downs and being a source of motivation for better health and well-being. This newfound friendship marked a significant turning point for Phillip, providing him with a sense of understanding and acceptance he had longed for.

“When we talk about vital services and supports and what this looks like beyond the science seeking to understand and treat PWS, it is the on-the-ground services and support that bring immediate relief, joy, and a sense of community to families and individuals like Phillip. The association’s peer support initiatives and programs, including the Time Out Camp and Christmas Party, are lifelines that foster not only independence and confidence but also a deep sense of belonging. Phillip’s story is a testament to the vital role of PWSA Victoria in not just supporting individuals with PWS but in nurturing a community where they can thrive, be themselves, and feel safe.”

Renee Zilm, President of the PWSA Victoria

Up until recently, Phillip served as an adult mentor within the PWSA Victoria, a role that provided him with a profound sense of purpose and belonging. Being able to support the younger generation of children with PWS was a role that Phillip enjoyed and was very proud of.

Phillip’s anticipation for the Time Out camp each year and its activities, the joy of forming lasting friendships, and his achievements, all reflect the irreplaceable value of the PWSA Victoria’s work and the impact the organisation has on those living with PWS.

As we remember Phillip and the indelible mark PWSA Victoria left on his life, we invite you to contribute in his honor. Donations will ensure the continuation of this vital work, helping to sustain programs that offer not just support but hope and a sense of belonging for those affected by PWS. Phillip’s legacy of courage, friendship, and independence, facilitated by PWSA Victoria, reminds us of the power of community and the essential need for comprehensive support beyond the realms of scientific research.

Together, we can ensure that the vital services and support systems provided by PWSA Victoria continue to touch lives, build communities, and offer a safe haven for individuals to truly be themselves. Your support can make all the difference.

Donate Today

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

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

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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.