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.

Ben brings the sunshine, always singing and dancing, even at inappropriate times making everyone smile, you’ll often find him and his brother Harry dancing in the kitchen.

Ben’s imagination takes his family to new places every day and his love for his family makes them all feel so special, he gives the best hugs and Harry is Ben’s favourite person in the world.

Ben’s love for animals is amazing, he’s so gentle with them, even feeding the fish in our aquarium by hand, we always have to stop at petting zoos, and you’ll often see the family stopping on the side of the road to watch the kangaroos or by ponds and lakes to see fish, frogs and ducks.

Ben loves movie nights and game nights, trying to bring as much fun into their family’s journey as possible.

Despite all the meltdowns and uphill battles Benny is brave and faces the world with a smile ready to say hello to everyone.

.

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 the 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 Together is Better – Meet Ben appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Harvey will say hello to anyone and everyone and makes friends easily.

When Harvey is older, he’d like to be a “doctor, because they helped me when I was a baby”.

“I just want him to be happy and have the same opportunities that our other kids have. I want him to dream big and want to be able to help him achieve everything he wants to achieve in life”

Renee (Mum)

Hyperphagia (constant hunger) is Harvey’s greatest daily challenge, but he manages to face the world every day with the biggest smile on his face and so much love in his heart.

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 the 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 He has a kind heart, he’s happy and thriving – Meet Harvey appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

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