2022 Time Out Camp

A Victorian Run Camp for all Australians living with Prader-Willi Syndrome

It seems like a lifetime since our community have been able to gather together, renew our friendships and meet new families. 

The Time Out Camp is like no other camp on offer. Whilst there are many camps available to children and adults through mainstream and special needs service providers, there is none that cater to the whole family.  

At the Time Out Camp, families are able to enjoy time out with their own family unit and adults with PWS are able to enjoy some time away in a safe environment that supports their needs, all while finding friendship, sharing laughter, feeling supported and understood from peers who are all experiencing the same challenges and understand the excitement of achievements that others don’t understand or appreciate.

Mixing with other families and individuals living with PWS is so rewarding for the children and adults with PWS, the siblings and the parents as we all have an understanding of how PWS can affect each other. 

Financial Assistance

We understand that not all families have received funding under their NDIS plan to enable them to attend the PWSA Victoria Time Out Camp, and although the 2022 Time Out Camp fees have been reduced to $50 per attendee, we understand that this can still be a substantial cost for many. If you are experiencing financial difficulty and would like to attend the Time Out Camp, please contact Renee Zilm via email (renee.zilm@pwsavic.org.au) or telephone 0447 778 301.

After the past few years, we have all had, everyone deserves some Time Out in a supportive environment and this is certainly the place to be able to do that.

Educational Speakers  

We have some educational guest speakers lined up for parents and Carers. 

  • Dr. Norbert Hödebeck-Stuntebeck – Future vision of living and Behavior in PWS
  • Georgina Loughnan – PWS – A Wholistic view
  • Rebecca Tahlia from Well Belly Health Clinic – The Fundations of good Gut Health and current research regarding PWS and Gut Health.
  • Little Dreamers who run sibling support for young carers in Victoria will be speaking about Young Carers and will facilitate activities with our Siblings.
  • More workshops and Guest speaker programs will be run throughout the duration of the camp.

AFL Grand final 

Due to COVID and the many postponements of the Time Out Camp, we have decided to reschedule the camp for the weekend of the AFL grand final this year. We understand this can be a big event for many and so Saturday will be designed to give those who are interested in the game an opportunity to watch the match on the big screen.

PWS Connect Day – Footy Theme

Given that most of our members and volunteers will be at Camp Toolangi for the weekend of our September PWS Connect Day, we have decided to host our community day at Camp and we, therefore, encourage any families who aren’t at the camp to come along and celebrate Grand Final. This will be a footy-themed day and we ask that you come bearing your teams’ colours. We will provide lunch on the day (Further details to be provided closer to the event)

This is also a great opportunity for those who are curious about the camp but do not yet want to commit, to come along and see what all the fuss is about. Who knows, you may not want to leave!

Employed Carers 

If you have an older teen under 18 who you wish to have assisted by their own carer, the cost for the carer will be $50. However, the family or at least one member of the family must also attend the camp. The Carer must be organised utilising their own NDIS funding. 

The Prader-Willi Syndrome Association of Victoria will provide Professional carers for adults (over 18) who wish to attend the camp. This will alleviate the need to access NDIS funding. If you wish to provide your own personal carer, this will need to be arranged by yourself and utilising your own NDIS funding.

There is a separate registration form for Carers. This can be accessed by clicking on the button below. Please do not include them in your family registration. 

Employed Carer Registration

Family and individuals with PWS Registration 

Registrations are now open for the 2022 PWSA Victoria Time Out Camp, and you can register now using the following registration


Volunteer Registration

The Time Out Camp relies heavily on Volunteers to help with the preparation, organisation and running of the camp. If you have a current working with children’s certificate and experience or qualifications in working with families with a disability we would love to have you on board.

Volunteer Registration

If you have any questions? Feel free to contact us confidentially at info@pwsavic.org.au 

For continued updates on the 2022 PWS Time Out Camp, please follow us on Facebook

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Article By Renee Zilm

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.