Wonderful Ambassadors for Prader-Willi Syndrome

The 2020 15 for 15 Challenge has raised over $28,000 and an incredible amount of awareness of Prader-Willi Syndrome globally. This was an enormous feat given the current climate we live in, so we are grateful beyond words to our community and all those who supported the campaign by donating and sharing our awareness posts during the month of May.

We’d especially like to thank the Rhys-Jones family for their significant contribution to this year’s 15 for 15 Campaign. Both David and Cheri have been heavily involved with the Prader-Willi Syndrome Association of Victoria. They have been incredible advocates for the PWSA Victoria over the years, and this year was certainly no exception.

The entire family joined the Challenge this year with David and Maddie performing push-ups each day while trying to beat the previous day’s number. Cheri and Cooper completed a ‘Just Dance’ Challenge which saw them grooving away to a different song each day.

Cheri and David also managed to give up alcohol during the 15 days, which during recent restrictions and homeschooling, Cheri says, was a big undertaking and one which they probably should have given more thought to before beginning the Challenge.

With so many online challenges happening on social media at the moment, we are all aware that entering into a challenge like this is never easy, especially when trying to juggle work, home duties, homeschooling, and caring for a child who requires additional support. Still, the family took it in their stride this year and managed to raise an enormous amount of awareness of Prader-Willi Syndrome, which is always our primary goal during the 15 for 15 campaign.

This year David kindly accepted our invitation to be the face of the Challenge and our 15 for 15 Ambassador. We could not be more grateful for his dedication to the role. With interviews on top-rating radio shows such as 3AW Melbourne – 693AM and SEN 1116 and in national publications such as the Sunday Herald Sun and AFL Record, this was a fantastic achievement and one that we could not have achieved without his involvement.

Team 15 for 15 for Cooper managed to fundraise the most considerable amount by any team in those years Challenge. Overall the 15 for 15 Campaign had an enormous reach, and the amount of awareness created in only the last week was incredible.

To put some perspective on the amount of awareness created over the entire campaign period, in only the final week of voting for one of our lucky finalist to win the grand prize of a weekend away to Balgownie Estate Vineyard Resort and Spa, our social media posts spread globally,

  • with over 30,000 views in 4 days;
  • 2,500 votes in total; and
  • votes received from Australia, India, the UK, America, and other countries.

This level of awareness should be celebrated, and if we were not all living through these crazy times of COVID-19 restrictions, we would be celebrating together as a community, as only we know how!

We hope that David and Cheri’s involvement in the 15 for 15 Challenge has inspired you to get involved in next year’s campaign. The more awareness we can raise and spread about Prader-Willi Syndrome, the closer we come to creating a world where people with Prader-Willi Syndrome live a full and inclusive life and above all else, this is what our community hopes for.

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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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Renee Di Genova
Article By Renee Di Genova

Renee enjoys working with organisations to improve business outcomes by implementing and reviewing procedures to assist organisations to work more efficiently, effectively and strategically. Renee is mother to 3 children, the youngest of whom was diagnosed with Prader-Willi Syndrome not long after birth. Renee now spends her days caring for her son and volunteering full time as President of the Prader-Willi Syndrome Association of Victoria, helping to build on the supports and services provided by the Association since 1979.