Registrations are now open for the 2023 Time Out Camp.

The Time Out Camp is like no other camp on offer. Whilst many camps are available to children and adults through mainstream, and special needs service providers, very few cater to the whole family.  

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

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

Registrations will close on the 17th of February, 2023, so don’t delay – The Registration Form is accessible below.

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. We also understand that fees to attend the Tiem Out Camp can 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.

Employed Carers 

If you have an older teen (under 18) who you wish to have assisted by their carer, you may do so. However, the family or at least one family member must also attend the camp. The Carer must be organised utilising their 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 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. 

Family and individuals with PWS Registration 

Registrations are now open for the 2023 Time Out Camp, and you can now register by clicking below.

Volunteer Registration

The Time Out Camp relies heavily on Volunteers to help with the camp’s preparation, organisation and running. 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.

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

For continued updates on the 2023 PWS Time Out Camp, please follow us on Facebook.

The post 2023 Time Out Camp appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

The Time Out Camp is a wonderful event. It allows our community to come together in a PWS-safe environment. The camp is unique in that it provides every member of the family with support.

“People underestimate the power and importance of peer support. When people come together to share their common experiences at our community events, everyone gains strength, support, clarity, and hope. There is absolutely nothing can compare to this vital service”

Renee Zilm
PWSA Victoria President

PWS Adult Mentor Program

Last year, the Time Out camp provided a wonderful opportunity for our Adult Mentors to assist in helping our families enjoy their time at the Camp. Our mentors assisted in registering and welcoming our guests and were provided with opportunities to lead activities and provide support where needed to our younger attendees. This was a great experience and an opportunity that we will continue to provide to our adults moving forward.

Young Carers Program

In our quest to seek interest and increase support for the young carers within our community, last year at the Time Out camp, our sibling group were introduced to an organisation called Little Dreamers, which Supports young people aged 4 to 25 who provide care for a family member affected by disability, chronic or mental illness, addiction or frail age. This introduction was well received by our group of young carers, which resulted in many registering for the Little Dreamers service. Little Dreamers will be attending this year’s Time Out camp and will work closely with us to develop and implement a program that best supports our young carers at this year’s camp. We are very excited to see how this program develops.

Save the Date!

The 2023 Time Out camp will be held during the Labour Day long weekend – Saturday, 11th March 2023 to Monday, 13th March 2023.

Further details about the upcoming camp, including registrations, will be released over the coming weeks.

The post 2023 Time Out Camp – Save the Date appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

We encourage any families who aren’t at the camp to come along and celebrate Grand Final. This will be a footy-themed day,The game will be televised on the big screen and we ask that you come bearing your team’s colours. We will provide lunch on the day.

This is 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!

Where: Camp Toolangi – 235 Spraggs Road, Toolangi

When: Saturday 24th September at 2pm

The post Grand Final PWS Connect Day appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

It will be a fun-filled day for the whole family with activities for all ages.

Where: Craig Family Centre – 7 Samarinda Ave, Ashburton Vic

When: 28 August 2022

Time: 10am to 4:30pm

A light lunch will be provided together with tea and coffee throughout the day. We do encourage families to bring along their own morning and afternoon tea.

The PWSA Victoria Annual General Meeting will be held on the same day at the same location. The meeting will begin at 11am. For those wishing to attend the meeting, we have arranged for volunteers to care for the children during this time.

Although free, this is a ticketed event. Registrations close on the 25th of August.

Get along to this great event – You won’t want to miss out!

The post PWS Family Connect Day and Annual General Meeting appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

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. 

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.

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

Further Information

• Download 2022 Time Out Camp Brochure
• Download NDIS Information

The post 2022 Time Out Camp appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Due to an overwhelming response to our previous Zoom discussion last week, there will be another session for those that missed out or those that wanted to come back and further contribute to the discussion.

This is an important opportunity for caregivers to have their say on the 15th of December at 8:00pm as this will be our final session for families to contribute to this stage of the project. This session will run for approximately one hour.

People with PWS deserve better and this project will allow us to improve healthcare and support for people with Prader-Willi Syndrome and their families. So no matter where you are on your journey, your feedback is important and invaluable.

This is an open invitation to have your say about a state-wide model of care and what that may look like.

Please register your interest by clicking on the button below

Further Information

• What is the State-wide Care Plan?
• How is this Project Funded?

The post Final call for Caregivers to have their say appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

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It’s been such a long time between celebrations, so we’re super excited about this event and can’t wait to see all of our PWSA Victoria Family and Friends there!

WHERE: Melbourne Zoo

WHEN: 28th November 2021 – 10:30am – 5:00pm

RSVP: 20th November 2021

WHAT TO BRING:

• Picnic Lunch and Snacks
• Picnic Rug

This event is free for all current PWSA Victoria members but tickets must be booked before the 20th of November to gain access to the event. Although FREE, Due to capacity limits, this is a ticketed event and tickets are strictly limited so to avoid disappointment, please register early.

RSVP will be on the 20th of November and no further tickets will be available after this date.

After not being able to come together for such a long time we want to welcome everyone back with a grand celebration. With lots of activities and surprises planned for the day, you won’t want to miss out.

The post Jolly Holiday Christmas Party appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

This is a great opportunity for us to showcase all that we have achieved over the past 12 months and more importantly hear from our community on items that matter to them.

Details of the AGM will be emailed to current members shortly. If you still haven’t registered your 2021/2022 membership, please do so by clicking on the link below the follwing video.

Further Information

• Become a Member
• What is the Prader-Willi Syndrome Association of Victoria?
• Who do we Support?
• Our Services

The post 2021 PWSA Victoria Annual General Meeting appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

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

The PWSA Victoria 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 PWSA Victoria 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 fees are subsidised this can still be a substantial cost for many. If you are a current member of the PWSA Victoria and have been since January 1st 2021 and experiencing financial difficulty, please contact Sarah Rees via email (sarah.rees@pwsavic.org.au) or telephone 0408 304 279.

After the year 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.  Carers Australia will be speaking to us about the new portal Carer gateway and their new offerings. They will also be providing information about Young Carers. Siblings who take on a caring role by just being part of the family are not necessarily primary Carers. Young Carers Victoria has programs for young people and many exciting benefits available. 

More speakers will be confirmed over the coming month.

AFL Grand final 

Due to COVID and the many postponemnets of the PWS Victoria Time Out Camp, we have had 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 the 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 members 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 and 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 not yet wanting 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 organised a Carer to accompany an adult who attends the camp alone, PWSA Victoria will cover the cost of food and accommodation for that Carer. NDIS does not cover these costs. If you have an older teen under 18 who you wish to have assisted by a Carer, these costs will also be covered. However, the family or at least one member of the family must also attend the camp and as with the adults, the Carer must be organised utilising their own NDIS funding. 

There is a separate registration form for Carers, so, please do not include them in your family registration. 

Further Information

• Download 2021 Time Out Camp Brochure
• Download NDIS Information

Registration 

Registrations are now open for the 2021 PWSA Victoria Time Out Camp, and you can register now using the following registration form:

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

For continued updates as the camp draws closer, please join the Facebook group: 2021 PWSA Victoria Time Out Camp 

The post PWSA Vic Time Out Camp 2021 appeared first on Prader-Willi Syndrome Association of Victoria, Australia.