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.
One of the more common characteristics of PWS is the development of an insatiable hunger around the age of 2 that lasts a lifetime. Imagine a hunger that can never be satisfied and the emotional state you find yourself in when ‘hangry.’ Feelings of anxiety, exhaustion, anger, frustration and stress plague your body and mind, and your focus on food is heightened. Now imagine trying to participate in everyday life, living with these feelings every minute of every day. This is an incredibly challenging state to live in daily.
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!
How will my fundraising efforts and donations support Prader-Willi Syndrome?
In May 2021, 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 develop a desperately needed state-wide, evidence-based model of care for children with Prader-Willi Syndrome.
The project will be led by Professor Katrina Williams of the Department of Paediatrics at Monash University in close consultation with Associate Professor Tom Connell from The Royal Children’s Hospital. Monash Partners Academic Health Science Centre, a partnership between leading health service, teaching and research organisations, will support the state-wide plan by working with all stakeholders, including children, families, carers and front-line clinicians, to identify and prioritise elements of best care. The elements that will be prioritised include specific interventions and supports, models of care, location of care and key principles of care.
The model will be designed for implementation across all Australian hospitals that care for children with Prader-Willi Syndrome.
Funds will also be directed to the Prader-Willi Syndrome Association of Victoria (PWSA Victoria) to ensure continuity and growth of the vital supports and services we provide to our community.
How it works
- Decide on your idea of a self-challenge that you will complete each day for 15 days beginning the 17th of May. Be as creative as you like (take a look at the 2019 highlights video for some inspiration)
- Visit the PWSA Victoria 15for15 cause on the GiveNow website, and click on the ‘Create CrowdRaiser button’ to create your own CrowdRaiser profile – Remember to include details of your Challenge in the cause description – Click here
- Share your GiveNow CrowdRaiser profile on social media using the #15for15challenge and remember to tag the Prader-Willi Syndrome Association of Victoria.
- Spread awareness of the 15 for 15 Challenge by tagging your friends and asking them to support you by either joining your challenge or donating.
- Share daily updates on your social media using text, photos or videos (make them fun and be as creative as possible), to keep your sponsors informed and engaged in your progress.
- Follow and share the Prader-Willi Syndrome Association of Victoria Facebook page and Instagram.
Win a Holiday for 4 Staying at Vibe Hotel Gold Coast
This includes seven nights stay for a family of four at Vibe Hotel Gold Coast which overlooks the picturesque sweep of the Nerang River, with views to the east of the sparkling ocean and west to the Gold Coast Hinterland. Driftwood Social offers a chilled out Miami pool club feel with riverfront cabanas and a retro-themed bar with a vibrant menu of light and refreshing dishes and sharing platters. The lucky family of 4 will love the hotel’s location close to the shopping, restaurants and entertainment district.
All Donations including Crowd Raisers that raise over $750 before the 1st June 2021 will be eligible for the Major Prize.
Terms and Conditions apply
How can I win this Prize?
Remember that May is also about raising awareness of Prader-Willi Syndrome, so those that create a Crowd Raiser and share regular updates to their social media tagging the Prader-Willi Syndrome Association of Victoria and using the #15for15challenge will gain an additional entry, therefore, doubling your chances of winning this fabulous prize!
But wait…. there’s more! For those that are able to entice friends and family to join their crowdraiser team and have them share their progress on Social Media in the same way, you’ll gain a 3rd entry into the draw and those friends and family members that join will gain an entry!
Winner will be announced on the 15th of June 2021
Win a Weekly Prize thanks to Squires Winery
15 for 15 Challenge Sponsor
Squires Winery will be sponsoring a weekly prize over each week of the 2 week challenge.
This Prize includes a Half Dozen mixed box of Squires wines, a total weekly prize value of $150.
How can I win this Prize?
To be eligible to win this prize, simply donate any amount over $15 directly to this cause or to a 15 for 15 Challenge CrowdRaiser and you will automatically go into the weekly draw.
Winners will be announced on the 15th June 2021
15 for 15 Merchandise
Raising Awareness of Prader-Willi Syndrome and our cause is easy when you have the right tools. We have a range of 15 for 15 Challenge designed t-shirts and hoodies available for purchase on the PWSA Victoria Community Store.
Items are limited, so order soon!Buy Now
Since establishing the 15 for 15 Challenge, together we have raised an incredible $89,000!
Funds raised from the 2020 15 for 15 Challenge were directed to the State-wide Care Plan. This project is now underway and the collaboration between Prader-Willi Syndrome Association of Victoria, Monash Children’s Hospital, Monash University, Royal Children’s Hospital and Monash Partners is a significant step forward for the Prader-Willi Syndrome Community. Funds raised during the 2020 campaign have also been utilised to continue the vital work that the PWSA Victoria provides to the Prader-Willi Syndrome community.
Funds raised from the 2019 15 for 15 Challenge were directed towards 2 projects.
The first project looks at investigating and developing an application or system that those living with Prader-Willi Syndrome can use to interact with, to describe their emotions and how they are feeling. We anticipate this will flow into benefits for the person and their carers in understanding and managing those emotions. In addition, the project will provide further flow-on research opportunities around emotions and triggers for behaviour in Prader-Willi Syndrome for researchers.
The second, smaller project, will look at addressing interactions between those living with Prader-Willi Syndrome and the Emergency services (particularly law enforcement). An expert in the FIT on technology for users with special needs will lead this project (together with the Prader-Willi Syndrome community) and will explore what kind of technologies (app, watch / wearable / smart band etc.) may help in the setting of those interactions; For example, by giving the emergency services personnel more information about the individual with Prader-Willi Syndrome that they are interacting with, rather than just responding to the immediate behaviour they are seeing, out of context
Thank you to the following supporters
Join our community and enjoy ongoing help & support.Visit PWSAVic.org.au
The Prader-Willi Syndrome Association of Victoria (PWSA Victoria) provides vital supports and services to people living with Prader-Willi Syndrome (PWS) including anyone who:
- cares for a person with Prader-Willi Syndrome;
- provides physical and emotional support to a person with Prader-Willi Syndrome;
- offers professional services to a person with Prader-Willi Syndrome; and
- that has interaction with a person who has Prader-Willi Syndrome
Australian Business Number
Prader-Willi Syndrome Association of Victoria Inc. ABN: 93 836 682 679
Prader-Willi Syndrome Association of Victoria Inc. is endorsed as a Deductible Gift Recipient (DGR) from 01 Jul 2000.
Australian Charities and Not for Profit
The Prader-Willi Syndrome Association of Victoria Inc. is registered with the Australian Charities and Not-for-profits Commission (ACNC). Details can be found here https://www.acnc.gov.au/charity
Deductible gift recipient status
DGR Reference Number: 900462951
Donors wishing to claim a deduction for gifts/donations $2 and over should make reference to the Prader-Willi Syndrome Association of Victoria Inc. and our DGR number (900462951) in their payment records.
Further information relating to Gifts and Fundraising can be accessed here. https://www.ato.gov.au/Non-profit/Gifts-and-fundraising/
PWS 15for15 Challenge – Copyright Chris Bain;
PWS 15for15 Challenge Australia – Copyright Chris Bain 2019