Power Ranger

Four years ago, the Prader-Willi Syndrome community was lucky enough to find themselves being supported by a figure in an orange lycra suit. In the beginning, it was unclear where this orange power ranger came from and why he was helping our community. Still, it soon became apparent that his heart was in the right place and his crazy orange power ranger suit was just the thing that would help spread the word about Prader-Willi Syndrome and why our community needed support and donations.

The PWS Power Ranger (Andrew Talbot) learnt about PWS after the daughter of a close friend was diagnosed with Prader-Willi Syndrome shortly after birth, four years ago. Since then, Andrew has been an incredible advocate for the PWS community and it’s been fantastic to follow him on his fitness journey. Andrew spent the past 24 months working closely with the PWSA Victoria board as the PWSA Victoria Ambassador, fundraising coordinator and more recently as a board member.

With a list of achievements including completing marathons, triathlons and many crazy fitness challenges, Andrew has inspired others to challenge themselves while spreading the word and educating people about PWS. On the final day of the 2020 PWS 15 for 15 challenge, Andrew rode for a total of 15 hours to complete a 290km bike ride being the equivalent of riding up mount Everest (8,848m elevation on a single climb). This is just one of the examples of the inspirational challenges he has pushed himself through over the last four years to help raise awareness and funds for PWS.

Sadly, after four years, our superhero has decided to take a break. He shared the following post with his Facebook and Instagram followers:

“This will be my last post for a little while. With what is happening in the world at the moment and after some recent events that have affected my own situation, I have sadly decided that I will no longer be representing PWSA Vic as their Ambassador.

After four years of volunteering for this very unique Association, I have been lucky to learn a hell of a lot about PWS and the difficulties families face. I’ve met some amazing people and fully enjoyed being involved and spreading awareness at events.

The PWS community is very much like a close-knit family. Together they will get through anything they face. I hope they are able to expand to achieve their goals! Stay safe, stay healthy and stay at home during these strange times!”

From our entire community, we thank you from the bottom of our hearts for all that you have done for Prader-Willi Syndrome. Your commitment to volunteer your time for our families is honourable and exemplary. We could not be more grateful for your advocacy and support. Our community is not often blessed with volunteers who are not direct family members of someone living with Prader-Willi Syndrome, so your willingness to get involved, meet our families and push for a brighter future for people living with Prader-Willi Syndrome is truly inspirational, and you should be incredibly proud of what you have achieved.

We hope that this is not goodbye forever, but just for now and we wish you luck in all areas of your life.

If you want to become a volunteer for the PWSA Victoria, please feel free to complete the volunteer form.

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 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.