The History of Prader-Willi Syndrome Awareness Month

During the month of May Community organisations, Associations and Foundations, Families and Supporters of people with Prader-Willi Syndrome all around the world do their part in raising awareness of Prader-Willi Syndrome.

May is also an important time for raising funds to help on the ground community organisations that provide vital and immediate support to people living with Prader-Willi Syndrome and to raise funds for research into this complex and life-threatening condition.

But how did it all begin and why are there so many causes and campaigns marketed during May? This article will provide you with some history of the Go Orange and 15 for 15 Campaigns which were both developed here in Victoria and hopefully alleviate any unnecessary confusion.

How did PWS Awareness month come about?

In 2013 a Melbourne school teacher contacted the Prader-Willi Syndrome Association of Victoria (PWSA Victoria) to ask if she could hold a gold coin dress up day to support the 2 children in her class who had Prader-Willi Syndrome. She wanted to know if there was a particular colour or awareness day to celebrate PWS, as many other organisations did.

At the time, there was no particular awareness day or month and therefore foundations for any fundraisers or official awareness colours had not yet been established. This gave way for some creative thinking.

Go Orange was officially born

In 2013, the Maguire Family, who were great supporters and very heavily involved with the PWSA Victoria, developed and produce a colourful campaign that would allow the PWSA Victoria to bring awareness of Prader-Willi Syndrome to a whole new audience and thus Go Orange was born!

Orange became the official awareness colour for Prader-Willi Syndrome as it had been previously utilised as the awareness colour for hunger and the last Friday of May became the official awareness day of Prader-Willi Syndrome so that communities in schools and workplaces could celebrate together and display their support by wearing orange as a culmination of a month of awareness and fundraising. 

The PWSA Victoria established a Go Orange platform for fundraising that was shared across Australia with all states having the funds they raised returned for state-based projects.  Merchandise was developed by the PWSA Victoria and distributed nationally and internationally.

As part of the campaign each year the PWSA Victoria produces daily factual posts about Prader-Willi Syndrome to help open up discussions amongst our communities family and friend network. This helps the wider community understand the complexity of Prader-Willi Syndrome and how better to support the family.

By 2017 Go Orange had become a global Awareness campaign! 

Countries around the world began to light up iconic buildings in orange and the PWSA Victoria Marketing department received a steady stream of requests from around the world for individualised Facebook profile frames for use in the campaign. Our factual posts were now being shared worldwide. 

Internationally and even Nationally very few are aware that this huge campaign was the brainchild of a couple of Victorians in Melbourne. 

As the campaign grew it became difficult to champion Victorian projects with transparency while all states had their own individual projects and were using the shared platform.  

After another successful Go Orange campaign in 2018, it was decided Go Orange would become a campaign that aimed to purely raise global awareness of Prader-Willi Syndrome and that this campaign would no longer be a fundraising event.

This led Associations and Foundations around Australia to develop their own fundraising campaigns.

THE PWS 15 for 15 Challenge

In late 2018 the PWSA Victoria was presented with an opportunity to develop a new awareness and fundraising campaign that would aim to continue to raise funds to assist them in continuing to provides the vital supports and services that they had done so for 40 years and allow them to grow their suite of services.

Chris Bain from Monash University in Melbourne, a relative to a child with Prader-Willi Syndrome, approached PWSA Victoria with an idea.  An avid cyclist, Chris wanted to ride up 15 mountains in 15 days and was interested in support from PWSA Victoria. Discussions grew and it was decided that anyone who wanted to challenge themself in any way, no matter how big or small could join Chris in his 15 days of Challenging himself. Thus the 15 for 15 Challenge was born.  

The campaign runs for the 15 days leading up to the end of May and the challenges can be physical, mental or abstinence based.  

You will recognise the ’15’ used by many Prader-Willi Syndrome fundraising events/campaigns as this is representative of the abnormality of the 15th chromosome pair which results in Prader-Willi Syndrome.

Watch the below Video to see how the 15 for 15 Challenge all began

The 2021 PWS 15 for 15 Challenge

Since 2019, our generous community has raised funds for several projects that are now coming to fruition, but the largest and most impactful is the current collaboration between the Prader-Willi Syndrome Association of Victoria, Monash Children’s Hospital, The Royal Children’s Hospital and Monash Partners Academic and Health Science Centre.

This monumental project is working towards a state-wide standard of care for children with Prader-Willi Syndrome. On completion of the project, both major Victorian hospitals (Monash Children’s Hospital and The Royal Children’s Hospital) will be treating paediatric patients with the same evidence-based methods and timelines. The model will be designed for implementation across all Australian hospitals that care for children with Prader-Willi Syndrome.

This will mean that all Prader-Willi Syndrome patients will receive the utmost care no matter where they live. Over time these guidelines and information will be available to all medical staff across Victoria. There is a large group currently researching the most up to date literature and medical papers and for our part, in the near future, we will be asking our own community to have their say in regard to what works and what is missing from the current system.   

A project of this size and calibre is a huge undertaking for all parties involved and to achieve the desired outcome we need to aim big in our fundraising efforts as this will allow us to keep up the momentum.

We are confident that our community can see the benefit of fundraising for a cause that will immediately benefit all families on the ground now and into the future.  

It is our vision that a successful rollout in Victoria will surely roll out to assist families across the whole country. 

Join the 15 for 15 Challenge and have some fun. Challenge your friends, schools and workplaces. There are some great prizes up for grabs! 

To learn more about the 2021 PWS 15 for 15 Challenge and how you can get involved visit our website www.pwsavic.org.au

The 2021 PWS 15 for 15 Challenge is proudly supported by:

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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.