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.
Join the challenge 17 to 31 May
One of the more common characteristics of PWS is the development of an insatiable hunger around the age of 2 that lasts a lifetime.
The International Prader-Willi Syndrome Organisation has described the hunger drive in people with PWS as a ‘starvation syndrome’
‘Prader-Willi Syndrome does not stop so neither can we!’
The situation with the Coronavirus (COVID-19) is challenging. We understand that during these times of uncertainty, this may not be the right time to be asking anything from you. However, your support means that we can be there for our community through these tough times and be there for them when this is all over. With increased calls for support to our service we know that Our community needs us now more than ever.
How will my fundraising efforts support Prader-Willi Syndrome?
In May 2020, 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 create a desperately needed state-wide, evidence-based model of care for children with Prader-Willi Syndrome that both major Victorian children’s hospitals (Monash Children’s Hospital and the Royal Children’s Hospital) will put into action. The model will be designed for implementation across all Australian hospitals. Funds will also be directed to the PWSA Victoria to ensure continuity and growth of the vital supports and services we provide to our community.
So what is the 15 for 15 Challenge and how can you get involved?
What do you think you could do for a 15-day self-challenge? Perhaps you could give up your daily coffee, or walk a certain amount of kilometres each day, you could style your hair crazily each day or wear Orange clothing (the official colour of PWS Awareness) each day?
The choice is yours but it needs to be something that both you and those close to you, see as a distinct challenge so they will sponsor and perhaps even join you.
We have all been in lock-down over the past couple of months and a lot of us still have a little more time on our hands than usual. Here is a chance to contribute to a worthy cause and do something that will challenge yourself.
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.