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.

The PWSA Victoria is very proud to announce that at our recent Annual General Meeting, Timoth Elson (Tim) was elected to join the PWSA Victoria Board as an ordinary member. Tim is very excited to be taking on this role and is very proud to have been nominated by his peers.

“I have joined the PWSA Victoria board to support people with PWS now and in the near future”

Timothy Elson (Ordinary Member)

Following our Annual General Meeting, the PWSA Victoria held its Strategic Planning Weekend. The theme for the weekend was Dream BIG – no dream is too big!

Before the Strategic Planning weekend, Tim showed pride in his leadership role by initiating discussions with others in the community about what changes the PWSA Victoria can implement in the organisation and for the community over the next few years.

Tim gathered feedback from the adult community and provided feedback to the team about where changes could occur and what changes should occur. It soon became apparent that we as an organisation have inadvertently overlooked the capability and many of the needs of our adult community. Tim shared some great ideas that he has for the future of PWSA Victoria, and these ideas have been included in our Strategic Plan, which will be shared in the coming months.

“This is a very exciting time for people living with PWS. To have Tim providing his voice and direction to the Board as to where we can do better and help people living with PWS in a meaningful way is really important. I’m so proud of the efforts Tim has made already and I can see that Tim’s contributions to the Board will be impactful and I have no doubt that our community will be better served as a result of him joining us.”

Renee Zilm (President of the PWSA Victoria)

Opening a position on the PWSA Victoria board for Tim to join came about as a result of the work that PWSA Victoria began last year in developing the Mentor Program. In developing and initiating the program we realised that adults with PWS are essential to our community. Formally adding their voice to the organisation signifies our commitment to creating a world where people with Prader-Willi Syndrome lead a full and inclusive life.

Michelle Alford, the Mentor Program Project Manager and Facilitator, will support Tim in his position. The PWSA Victoria board will be heavily guided by Michelle to ensure Tim’s position on the board is inclusive and valued. Michelle has extensive experience in working with adults with Prader-Willi Syndrome.

The post An Adult living with PWS appointed to the PWSA Victoria Board 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.

You can put things in place to help ensure you are ready to best support those who have Prader-Willi Syndrome (PWS) throughout the coming months.

It is very important to be fully prepared and armed with the best knowledge possible of how to manage COVID for someone who has PWS. This is especially significant in the home environment (whether the family home or supported living) as those are the supporters who can make the most comprehensive observations.

We have prepared a Prader-Willi Syndrome Covid Information brochure in collaboration with Professor Irving and Professor Buising from the Royal Melbourne Hospital Respiratory specialists department.

This document has been designed mainly for families of our adults, disability support providers and General Practitioners.

The post Preparing for a challenging Flu season appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

She likes to play with her baby doll – feed her, and cuddle her. She also loves to give lots of cuddles to her family every day.

She shows a lot of empathy for others and can’t see anyone crying without hugging them and calming them down with her little cute hand.

“We will never tell her that we feel sorry for what you are going through and that we feel sorry for you, we will always tell her we love her and we are going all the way with you”.

Rabi (Dad)

People with Prader-Willi Syndrome are kind, resilient, wonderful individuals, they have goals, dreams, and aspirations just like everyone else. Families strive to support their loved ones with Prader-Willi Syndrome and help them live their best life and this year want to bring awareness to others to ‘see their child as they see themselves – the whole person rather than just a person with a Prader-Willi Syndrome’.

In May, 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 continue developing a desperately needed state-wide, evidence-based model of care for children with Prader-Willi Syndrome.

The project is 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 program is being developed for implementation at both major Victorian paediatric hospitals (Monash Children’s Hospital and The Royal Children’s Hospital with regional links.

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 the continuity and growth of the vital supports and services we provide to our community.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post She is amazing and we are so proud of her – Meet Sara & Family appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Teagan has enjoyed her first year of high school. She loves socialising and will stop and chat with anyone with an animal that she can pet.

“I really like animals and dogs, so I really want to look after dogs. Start a day-care for them”

Teagan

He loves to play outside in his mud kitchen or cubby house. He also loves lego, imaginative play, dancing and singing. He is obsessed with nursery rhymes and fairytales and knows his favourite ones inside out…. So don’t mess with him and change the storyline or words!!

Teagan loves getting out and competing in little athletics, cross country and swimming. Her favourite activities are art and Lego. She also loves helping mum with cooking.

“I have low muscle tone and sometimes get bullied. It’s very hard in life. Sometimes I get picked on at school and taken advantage of”

Teagan

Important note: Teagan felt that it was important to talk about the challenges she faces with Prader-Willi Syndrome and in life as this is part of her story and she wanted to share this in her video so that others are aware – We are very proud of Teagan for owning her story and being so open

People with Prader-Willi Syndrome are kind, resilient, wonderful individuals, they have goals, dreams, and aspirations just like everyone else. Families strive to support their loved ones with Prader-Willi Syndrome and help them live their best life and this year want to bring awareness to others to ‘see their child as they see themselves – the whole person rather than just a person with a Prader-Willi Syndrome’.

In May, 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 continue developing a desperately needed state-wide, evidence-based model of care for children with Prader-Willi Syndrome.

The project is 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 program is being developed for implementation at both major Victorian paediatric hospitals (Monash Children’s Hospital and The Royal Children’s Hospital with regional links.

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 the continuity and growth of the vital supports and services we provide to our community.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post She loves an adventure – Meet Teagan appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

“He’s brought so much joy and love into our world and I think we’re all better people because of Zac”

Jody (Mum)

He loves to play outside in his mud kitchen or cubby house. He also loves lego, imaginative play, dancing and singing. He is obsessed with nursery rhymes and fairytales and knows his favourite ones inside out…. So don’t mess with him and change the storyline or words!!

While many things are a challenge in Zac’s world, he has proven that with time and patience, no obstacle is too big.

People with Prader-Willi Syndrome are kind, resilient, wonderful individuals, they have goals, dreams, and aspirations just like everyone else. Families strive to support their loved ones with Prader-Willi Syndrome and help them live their best life and this year want to bring awareness to others to ‘see their child as they see themselves – the whole person rather than just a person with a Prader-Willi Syndrome’.

In May, 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 continue developing a desperately needed state-wide, evidence-based model of care for children with Prader-Willi Syndrome.

The project is 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 program is being developed for implementation at both major Victorian paediatric hospitals (Monash Children’s Hospital and The Royal Children’s Hospital with regional links.

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 the continuity and growth of the vital supports and services we provide to our community.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post Dances to his own tune – Meet Zac appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

“Just enjoy it (the now), because if you’re worried about the future you don’t really worry about what’s happening now so just enjoy it and take it day by day”

Shannon (Dad)

Enola really loves playing with her big sister and is often laughing nonstop together. She loves to be read to and listen to music. Mum and Dad are so super proud of all the little milestones she is achieving.

People with Prader-Willi Syndrome are kind, resilient, wonderful individuals, they have goals, dreams, and aspirations just like everyone else. Families strive to support their loved ones with Prader-Willi Syndrome and help them live their best life and this year want to bring awareness to others to ‘see their child as they see themselves – the whole person rather than just a person with a Prader-Willi Syndrome’.

In May, 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 continue developing a desperately needed state-wide, evidence-based model of care for children with Prader-Willi Syndrome.

The project is 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 program is being developed for implementation at both major Victorian paediatric hospitals (Monash Children’s Hospital and The Royal Children’s Hospital with regional links.

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 the continuity and growth of the vital supports and services we provide to our community.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post Just take it day by day – Meet Enola and Family appeared first on Prader-Willi Syndrome Association of Victoria, Australia.