We are excited to introduce the 2024 PWS Awareness Collection!

This year, we’re embracing a powerful message that resonates deeply for every single person living with Prader-Willi Syndrome. 

In essence, we believe this statement/motto speaks to the core of the human experience within the PWS community—a collective journey marked by hope, resilience, and the universal desire to live life to its fullest, or to live a life without the challenges of hyperphagia, regardless of the challenges faced.

It underscores a shared commitment to support, love, and strive for a future where everyone affected by PWS can achieve their dreams and aspirations.

The Sunflower

Our 2024 collection proudly features the sunflower – a universal symbol for invisible disability.

The term “invisible disability” refers to disabilities that are not immediately apparent to others, such as chronic pain, mental health issues, cognitive dysfunctions, and in the case of PWS, the behavioral, emotional, and cognitive challenges that individuals face. These aspects of the syndrome can profoundly impact an individual’s ability to perform daily activities, work, and interact socially, even though they may not be as visible as physical disabilities.

By choosing the sunflower, we acknowledge the unseen struggles and celebrate the incredible resilience of the PWS community. 

Shop to Support, Wear to Advocate!

Your support means the world to us and to every individual and family living with PWS.  

We’re inviting our members to make an early purchase this year! By securing your items from the 2024 PWS Awareness Collection now, you will have these items ready to go come May, because with every item you purchase, you’re not just wearing a piece of clothing or accessory; you’re carrying a beacon of hope and a banner of advocacy for those living with Prader-Willi Syndrome

2024 PWS Awareness Collection

We are excited to launch this year’s Awareness collection ahead of PWS Awareness month in May. This year, we’re embracing a powerful message that resonates deeply for every single…

Read More

Chocolate-Free Activity ideas for Easter

Easter is a time for celebration, joy, and family gatherings. However, for those in the Prader-Willi Syndrome (PWS) community, traditional Easter egg hunts featuring chocolate treats can pose challenges….

Read More

United in Hope: 12th International PWS Conference

This conference, themed “United in Hope,” signifies an unprecedented collaboration and is expected to become the most significant international gathering focused on PWS to date.

Read More

The post 2024 PWS Awareness Collection appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Non-Food Treasure Hunts as Alternatives to Traditional Chocolate Egg Hunts

Instead of the traditional chocolate easter egg hunt, there are plenty of creative alternatives that can be just as enjoyable for children and adults alike. Younger kids might delight in searching for hidden treasures like stickers, stationery, playdough, bubbles, small toys, hair accessories, mini books, or bouncy balls, which can be placed in their Easter baskets. Another option is to hide small gifts inside plastic eggs, readily available at toy stores or discount stores.

Alternative Easter Egg Hunt Ideas

We’ve complied a list of chocolate-free alternatives for your Easter Morning Easter Egg Hunt. We hope you enjoy these!

Puzzle Piece Hunt:
Purchase a puzzle and hide each piece inside plastic eggs around your home or yard. Each child collects eggs, and once they’ve found all the pieces, they work together to assemble the puzzle. This promotes teamwork and problem-solving skills.

Nature Hunt:
Instead of eggs, hide natural objects like colorful stones, seashells, or pinecones. Provide a checklist for the kids to mark off each item as they find them, encouraging exploration and appreciation of the outdoors. This sensory-rich activity fosters a deeper connection with nature. Once all the items have been ticked off the list an Easter-themed prize can be given.

DIY Craft Hunt:
Hide craft supplies or materials in the eggs, such as beads, stickers, feathers, or googly eyes. After the hunt, kids can use the items they’ve collected to create their own Easter crafts. This sparks creativity and artistic expression while avoiding food-related triggers.

Glow-in-the-Dark Hunt:
For an evening or indoor hunt, fill plastic eggs with glow sticks or glow-in-the-dark toys. Turn off the lights and let the kids search for the glowing eggs, adding an extra element of excitement to the hunt. This unique twist adds a sense of magic and wonder to the Easter festivities.

Golden Ticket Hunt:
This is a great one for the older kids/adults. Place special “golden tickets” inside a few select plastic eggs. Each ticket entitles the finder to a larger prize or special privilege, such as choosing a movie for the family to watch or using their golden ticket as a once off trade for getting out of a chore they are responsible for.

Trivia Hunt:
Write Easter-themed trivia questions and place them inside the eggs along with the answers. As kids find the eggs, they can read the questions aloud, and everyone can try to answer them together. This educational hunt promotes learning and family bonding.

Activity Hunt:
Fill the eggs with small cards or slips of paper with different activities written on them, such as “do a silly dance,” “tell a joke,” or “give someone a compliment.” Kids can complete the activities as they find the eggs, promoting fun interactions and socialisation.

Riddle Hunt:
Write rhyming riddles that lead to the location of hidden eggs. Kids must solve each riddle to find the next egg, adding an element of problem-solving and critical thinking to the hunt. This stimulates cognitive skills in an entertaining way. There are many free templates available online, or you can print and use this one.

Chocolate-Free Easter Activities

While most holiday celebrations often revolve around food, there are plenty of ways to enjoy quality family time through craft activities and games. Crafting during the Easter holiday can encompass a variety of egg-themed projects, such as decorating egg-shaped cards, decorating bunny ears or creating an easter bonnet, making paper flowers, salt dough decorations, or even building a bird feeder.

For entertainment, families can partake in egg and spoon races, bunny sack races, or balloon games to keep the festive spirit alive. In addition to alternative egg hunt ideas, here are some super fun ways to celebrate Easter with chocolate-free alternatives for the entire family:

Planting Seeds
Have an Easter gardening activity where kids plant seeds in pots. This not only teaches them about growth and nature but also gives them something to care for beyond Easter.

Easter Crafts:
Set up a craft station with materials for making Easter-themed crafts such as bunny masks, paper chicks, or flower crowns.

Egg Painting Contest:
Host an egg painting contest where each member of the family can showcase their creativity. Provide prizes for different categories like “Most Colorful,” “Most Unique,” or “Best Easter Theme.” Eggs can be cut-outs from cardboard, styrofoam eggs etc.

DIY Bunny Ears or Easter Bonnet:
Provide materials for kids to make their own bunny ears headbands or colorful Easter Bonnet. They can then wear them during Easter activities for added fun.

Easter Piñata:
Create a homemade Easter piñata shaped like a bunny, chick, or egg. Fill it with small toys, stickers, sensory toys or other non-edible treats for the kids to enjoy. Discount variety stores, toy stores, and stores like k-mart have these items at great prices tomake this an easy and affordable option.

Easter Themed Movie Marathon:
Get cozy and enjoy an Easter-themed movie marathon featuring family-friendly films like “Hop,” “Peter Rabbit,” or “It’s the Easter Beagle, Charlie Brown.”

Healthier Chocolate Options

For those families who feel comfortable with including chocolate in their diet, opting for dark chocolate with a high cocoa content can be a healthier choice, as it typically contains less sugar. It’s important to check labels to ensure the sugar content is within your threshold. Alternatively, sugar-free chocolates are available in the health food section of most grocery stores. However, it’s essential to remember that every family’s dietary needs and preferences are unique. You shouldn’t feel guilty for your choices, and whatever works best for your family is what you should do. Whether it’s enjoying a small indulgence of chocolate or exploring alternative treats, the most important thing is to always prioritise your family’s health and happiness.

Conclusion

Easter is a cherished time for gathering with friends and family, coming together to celebrate the joy of renewal and new beginnings. It’s a time to cherish each other’s company, create lasting memories, and embrace the true essence of the holiday. As we prepare for Easter festivities, it’s important to remember that inclusivity and consideration for everyone’s needs, including those with Prader-Willi Syndrome (PWS), are paramount.

By providing healthier alternatives to traditional chocolate and sweets, we ensure that all children, regardless of their dietary restrictions, can fully partake in the joy of the season. Whether it’s through creative non-food treasure hunts, thoughtful Easter gifts, engaging crafts and games, or nutritious treats, let’s celebrate Easter in a way that fosters togetherness and happiness for everyone involved.

As we gather around the table and share in the spirit of Easter, let’s embrace the opportunity to create meaningful traditions that reflect the true meaning of the holiday—love, hope, and the joy of being together. Happy Easter to all, may this season be filled with warmth, laughter, and cherished moments with loved ones.

LATEST NEWS

2024 PWS Awareness Collection

We are excited to launch this year’s Awareness collection ahead of PWS Awareness month in May. This year, we’re embracing a powerful message that resonates deeply for every single…

Read More

Chocolate-Free Activity ideas for Easter

Easter is a time for celebration, joy, and family gatherings. However, for those in the Prader-Willi Syndrome (PWS) community, traditional Easter egg hunts featuring chocolate treats can pose challenges….

Read More

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This conference, themed “United in Hope,” signifies an unprecedented collaboration and is expected to become the most significant international gathering focused on PWS to date.

Read More

The post Chocolate-Free Activity ideas for Easter appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

This conference, themed “United in Hope,” signifies an unprecedented collaboration and is expected to become the most significant international gathering focused on PWS to date.

For details on the venue and hotel reservations, visit the PWSA | USA conference webpage at: www.pwsausa.org/2025-united-in-hope-conference

For information about visas, international travel, and travel fellowships, check out IPWSO’s conference page at: www.ipwso.org/news-events/conference-2025

Conference Details

Conference Website: https://ipwso.org/news-events/conference-2025/

Conference Organising Committee:

International Prader-Willi Syndrome Organisation

Foundation for Prader-Willi Research

Prader-Willi Syndrome Association | USA

2024 PWS Awareness Collection

We are excited to launch this year’s Awareness collection ahead of PWS Awareness month in May. This year, we’re embracing a powerful message that resonates deeply for every single…

Read More

Chocolate-Free Activity ideas for Easter

Easter is a time for celebration, joy, and family gatherings. However, for those in the Prader-Willi Syndrome (PWS) community, traditional Easter egg hunts featuring chocolate treats can pose challenges….

Read More

United in Hope: 12th International PWS Conference

This conference, themed “United in Hope,” signifies an unprecedented collaboration and is expected to become the most significant international gathering focused on PWS to date.

Read More

The post United in Hope: 12th International PWS Conference appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

This pivotal conference co-hosted by PWRFA, PWSA Aust, PWSA NZ, PWSA Malaysia, and PWSA Thailand, is dedicated to advancing knowledge and support of Prader-Willi Syndrome (PWS), and will offer both in-person and virtual attendance options, ensuring accessibility for all interested parties, regardless of location.

Spanning two days, the conference is designed to cater to a diverse audience, including researchers, parents, and professionals all connected by the goal of enhancing the lives of those with PWS.

Research Day (30th August)

The first day is dedicated to cutting-edge research, led by the esteemed Prader-Willi Research Foundation Australia (PWRFA). It’s a unique opportunity for scientists and researchers to share, collaborate, and ignite new ideas in the fight against PWS.

A Day for Parents, Professionals, and Support Providers (31st August)

The second day shifts focus to practical support, education, and resources for parents, professionals, and support providers. Covering an array of essential topics such as genetics, neurotypical behaviors, healthcare, physiotherapy, nutrition, and sleep, the program is designed to provide invaluable insights and tools for those providing day-to-day care and support.

Attendees have the flexibility to register for the entire two-day conference or select the day that most aligns with their interests and needs. Whether you’re a researcher eager to dive into the latest discoveries, a parent looking for guidance and support, or a professional dedicated to making a difference in the lives of those with PWS, this conference promises a wealth of knowledge, networking opportunities, and inspiration.

Don’t miss this chance to be part of a community driving change and improvement in the lives of individuals with Prader-Willi Syndrome. Register now to secure your spot at this essential event for the PWS community.

Conference Details

Registration: Registrations will open shortly.

Abstract Submissions

Abstract Submissions are being accepted for the Research Day on August 30th. Ensure your submission includes the title, authors & their affiliations, and that the main body of the abstract is under 250 words. For any inquiries, reach out to Diane Webster, the Research Director at PWRFA, at diane.webster@praderwilli.org.au

The deadline for abstract submission is May 30th, 2024.

Submissions can be uploaded here

Conference Organising Committee:

Prader-Willi Syndrome Australia

Prader-Willi Research Foundation of Australia

Prader-Willi Syndrome Association New Zealand

Prader-Willi Syndrome Association of Malaysia

Prader-Willi Syndrome Association of Thailand

2024 PWS Awareness Collection

We are excited to launch this year’s Awareness collection ahead of PWS Awareness month in May. This year, we’re embracing a powerful message that resonates deeply for every single…

Read More

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Easter is a time for celebration, joy, and family gatherings. However, for those in the Prader-Willi Syndrome (PWS) community, traditional Easter egg hunts featuring chocolate treats can pose challenges….

Read More

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This conference, themed “United in Hope,” signifies an unprecedented collaboration and is expected to become the most significant international gathering focused on PWS to date.

Read More

The post 6th Asia Pacific Prader-Willi Syndrome Conference appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

The program consists of:

• A small group of around 15 Young Carers
• 4 workshops, held monthly on a Saturday at Little Dreamers HQ in South Melbourne
• A 2 night / 3 day retreat held in Anglesea
• Mentoring and regular check-ins from Team Leaders and Little Dreamers Staff
• A graduation event at the conclusion

Throughout the program, you’ll:

• Build friendships and make connections with other Young Carers
• Learn new skills to navigate challenges and thrive in your personal life and career
• Have fun and come together as a group

Learn more at our Information Session
Register and attend our Online Information Night on Tuesday 26th March – 7:30-8:30pm.

Ready to apply? If this sounds like you, then Apply here

2024 PWS Awareness Collection

We are excited to launch this year’s Awareness collection ahead of PWS Awareness month in May. This year, we’re embracing a powerful message that resonates deeply for every single…

Read More

Chocolate-Free Activity ideas for Easter

Easter is a time for celebration, joy, and family gatherings. However, for those in the Prader-Willi Syndrome (PWS) community, traditional Easter egg hunts featuring chocolate treats can pose challenges….

Read More

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This conference, themed “United in Hope,” signifies an unprecedented collaboration and is expected to become the most significant international gathering focused on PWS to date.

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The post BIG DREAMERS: Personal Development Program appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Young Carers will provide care for a loved one in varying capacities. This could range from emotional support and assistance with household activities, lifting, dressing and feeding.

Supporting the siblings within our PWS community who have a brother or sister living with Prader-Willi Syndrome (PWS) is a vital and often overlooked aspect of our mission.

These siblings face unique challenges and emotions that can easily be overshadowed by the intense focus on caring for individuals with PWS and the understandable overwhelming surge of emotions experienced by parents.

However, recognising and addressing the needs of these siblings is paramount. By offering them support, understanding, and tailored resources, we not only validate their experiences but also provide them with the tools to navigate the complexities of their family dynamics. It is our belief that by focusing on the holistic well-being of every member of our community, including siblings, we can foster a more inclusive, empathetic, and resilient environment for all.

Australian siblings of PWS individuals, your time is now. It’s your turn to step into the spotlight! PWSA Victoria, in collaboration with Carer’s Gateway Young Carers and Little Dreamers, is thrilled to announce a groundbreaking 8-week Online Sibling Peer Support Program, tailored for YOU. Kicking off in Term 2 of 2024, join us to navigate the shared journey, celebrate your role, and connect with those who truly understand. Your support network awaits – let’s thrive together!

We have joined forces with Carer’s Gateway Young Carers and Little Dreamers to establish a comprehensive support network for the siblings within our community.

An 8-week Online Sibling Peer Support Program aimed at Siblings aged up to 25 years of age. The Program is led by two seasoned staff members from Carer’s Gateway and Little Dreamers, will kick off in Term 2 (2024).

This program will be accessible to siblings across Australia.

Recognising the unique challenges faced by siblings of individuals with PWS, Carer’s Gateway and Little Dreamers have agreed to host a dedicated PWS-specific group.

Additionally, PWSA Vic encourages siblings to explore membership in general groups and engage in the broader array of experiences offered by Little Dreamers.

If this initiative proves successful, we plan to introduce additional programs following the initial pilot, further expanding our support offerings to siblings.

2024 PWS Awareness Collection

We are excited to launch this year’s Awareness collection ahead of PWS Awareness month in May. This year, we’re embracing a powerful message that resonates deeply for every single…

Read More

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Easter is a time for celebration, joy, and family gatherings. However, for those in the Prader-Willi Syndrome (PWS) community, traditional Easter egg hunts featuring chocolate treats can pose challenges….

Read More

United in Hope: 12th International PWS Conference

This conference, themed “United in Hope,” signifies an unprecedented collaboration and is expected to become the most significant international gathering focused on PWS to date.

Read More

The post Register Now: PWS Sibling Support Program. appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Response Required by 25th March 2024

We hear from many families within our community about the struggles they face navigating the education system for their children with Prader-Willi Syndrome (PWS). A recurring issue is that, despite their children’s cognitive functions being lower than peers and facing challenges like social adaptation, high anxiety, low muscle tone, food-seeking behaviors, and temper outbursts, these symptoms are often not evident or fully understood at the time of school admission.

Consequently, early assessments and misunderstandings of the evidence-based staged developmental needs of children with Prader-Willi Syndrome, conducted by professional early childhood caregivers, Allied Health Professionals, or Medical Specialists, may not accurately reflect the level of support these children require at the time or in the near future. This often leads to children with PWS being unable to access specialist schools, leaving them with no choice but to attend mainstream schools that may not be equipped to meet their specific needs.

Despite the students ability to mask their difficulties to some degree, making them appear more capable than they are, it’s crucial to acknowledge the high level of support students with Prader-Willi Syndrome genuinely need throughout their educational journey.

The Victorian Government is dedicated to improving the educational journey for students with disabilities and high needs. By inviting the PWS community to participate in a thorough review of the enrolment processes and criteria for specialist schools, they aim to ensure that every child receives the education and support they deserve. This is a significant step towards recognising and addressing the unique challenges faced by students with PWS and their families, and we strongly encourage your participation in this pivotal initiative.

Purpose of the Survey

The heart of this initiative is a detailed survey designed to gather insights directly from those who experience the system first-hand: the students and their families. By participating in this survey, parents, carers, and students will provide valuable feedback on their experiences with specialist schools, including the application and enrolment processes, the support received, and the overall educational environment directly to the Victorian Government Inclusive Education Division.

The PWSA Victoria acknowledges that the survey does not fully capture the full range of challenges children within our community encounter in educational settings. Therefore, we encourage you to also share your experiences in mainstream schools directly with us, so that we can then share this with the department.

This feedback is crucial for identifying areas where improvements can be made and will be shared with policymakers, with the hope of driving meaningful change., ensuring that every student with a disability or high needs has the opportunity to thrive in an educational setting that best suits their needs.

Why Your Voice Matters

Families of children with disabilities, including those with Prader-Willi Syndrome (PWS), often navigate a complex landscape of care, support, and education. Children with PWS exhibit a range of physical, cognitive, and behavioral characteristics, which can present unique challenges in an educational setting. For these children, the right educational environment can significantly impact their development, future opportunities, and overall quality of life.

Your participation in this survey will shed light on the effectiveness of current processes and identify where additional resources, support, and policy adjustments are needed. It’s an opportunity to make your voice heard and contribute to meaningful change that will benefit the PWS community and other families navigating intellectual disabilities in the educational system.

Mainstream Victorian Government, Catholic and Independent School Feedback

As noted above, The PWSA Victoria acknowledges that the Victorian Government survey does not fully capture the full range of experiences that families and students within our community encounter in other educational settings beyond specialist schools.

Therefore, we encourage you to also share your experiences (good and bad) in mainstream schools (this includes government, Catholic, and independent schools) directly with us, so that we can then compile this information to share with the Victorian Government Inclusive Education Division and other educational bodies that govern these schools.

Your insights are crucial for fostering improvements in how our education system supports students with Prader-Willi syndrome and similar needs.

How to Participate

If you are a parent and/or carer of a child with experience in the specialist school system or a current or former student, please complete either of the Victorian Government Survey’s below.

If you are a parent/carer to a child who is a current or former student of Mainstram school and wish to provide feedbackl, please complete the Mainstream School Feedback form above.

The Victorian Government survey is designed to be accessible and straightforward, allowing you to share your experiences candidly and constructively. Questions will cover a range of topics, from the initial application process to the day-to-day experiences in specialist schools, focusing on both the successes and challenges encountered.

The survey is for parents and carers of a child with a disability with experience in the specialist school system. There is also a survey for current and former specialist school students.

If you wish to provide your feedback to this Survey please select either button below:

There is an easy English version of both the parent/carer survey and the current/former student survey. If you would like a copy of this survey, please send an email to Jordan Landers to ask for this version of the survey. Jordan’s email address is jordan.landers@au.ey.com.

Conclusion

This is a pivotal chance for our community to engage with policymakers and advocate for the necessary changes to support our children, particularly those with Prader-Willi Syndrome. By ensuring these students are comprehensively supported in their education, focusing on essential life skills and future success, we can pave the way for them to become valued members of society. It’s crucial that policies evolve to reflect this goal, and this initiative presents a golden opportunity to drive such change.

By taking part in this survey and sharing or providing your input through this feedback initiative, you’re not just sharing your story; you’re paving the way for a future where every child with a disability receives the education and support they deserve.

Let’s come together as a community to make this vision a reality. Your experiences, insights, and suggestions are the keystones to building an educational system that uplifts every student, regardless of their challenges.

For further details and to take part in the survey, please visit the Victorian Government education website. Together, we can create a positive change for the PWS community and beyond. www.education.vic.gov.au 

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We are excited to launch this year’s Awareness collection ahead of PWS Awareness month in May. This year, we’re embracing a powerful message that resonates deeply for every single…

Read More

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Easter is a time for celebration, joy, and family gatherings. However, for those in the Prader-Willi Syndrome (PWS) community, traditional Easter egg hunts featuring chocolate treats can pose challenges….

Read More

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This conference, themed “United in Hope,” signifies an unprecedented collaboration and is expected to become the most significant international gathering focused on PWS to date.

Read More

The post Exploring the Experiences of Families in an Educational Setting: appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

In a world where scientific research tirelessly seeks answers, the Prader-Willi Syndrome Association of Victoria (PWSA Victoria) emerges as a beacon of hope, not just for the future, but for the present. It’s a story best illustrated through the life of Phillip, whose journey with Prader-Willi Syndrome (PWS) underscored the profound impact of community, support, and understanding—facets of life that PWSA Victoria champions tirelessly.

Phillip’s early years were defined by the challenges of PWS, a condition diagnosed when he was just two and a half. His childhood in Central Queensland was marked by isolation and very limited support. His family and medical specialists navigated through uncertainties, relying on sparse medical knowledge from overseas as not much information was readily available in Australia at the time.

During his time in Queensland, Phillip struggled to connect with others on a personal level, as there was a general lack of understanding and acceptance of Prader-Willi Syndrome and the daily challenges he faced. It wasn’t until his family decided to move to Victoria during Phillip’s adult years that his life took a remarkable turn.

In Victoria, the well-established Prader-Willi Syndrome community has been instrumental in providing a support system for families. This environment meant that upon moving, Phillip and his family found themselves in a more nurturing and informed setting compared to their earlier experiences in Queensland.

The availability of resources, information, and specialised support in Victoria significantly enhanced Phillip’s quality of life. However, living in a small Victorian town before the advent of the technology and internet we take for granted today posed its own challenges. Despite the supportive community available to him, the lack of modern connectivity limited Phillip’s opportunities to engage with others facing similar journeys.

It wasn’t until age 36, Phillip truly experienced the transformative power of community for the first time through PWSA Victoria’s first community Camp. Whilst the Association had provided other opportunities for Peer Support events, due to Phillip’s location in country Victoria, these smaller events were often difficult for the family and Phillip to attend.

So, this first camp was far from being just a gathering for Phillip, this camp became the pinnacle of his year. This was a space where he found not only acceptance but belonging. It was here, amidst peers and through shared experiences, that Phillip’s life was imbued with a sense of purpose and friendship.

The camp, particularly, offered him a sanctuary to connect, celebrate his passions, and build up his courage to engage in activities like the flying fox, which symbolised his journey towards independence and resiliance.

Having spent over 30 years feeling different, misunderstood, and isolated in his small local community, the Time Out Camp offered Phillip a unique opportunity to connect with others like him.

In speaking to others within the PWS Community, Phillip described the camp as a safe space where

“I can just be myself”.

Following his first Camp experience, Phillip formed friendships unlike any he had experienced before. Meeting his best friend Tim, the two became a life-line for each other, supporting each other through their ups and downs and being a source of motivation for better health and well-being. This newfound friendship marked a significant turning point for Phillip, providing him with a sense of understanding and acceptance he had longed for.

“When we talk about vital services and supports and what this looks like beyond the science seeking to understand and treat PWS, it is the on-the-ground services and support that bring immediate relief, joy, and a sense of community to families and individuals like Phillip. The association’s peer support initiatives and programs, including the Time Out Camp and Christmas Party, are lifelines that foster not only independence and confidence but also a deep sense of belonging. Phillip’s story is a testament to the vital role of PWSA Victoria in not just supporting individuals with PWS but in nurturing a community where they can thrive, be themselves, and feel safe.”

Renee Zilm, President of the PWSA Victoria

Up until recently, Phillip served as an adult mentor within the PWSA Victoria, a role that provided him with a profound sense of purpose and belonging. Being able to support the younger generation of children with PWS was a role that Phillip enjoyed and was very proud of.

Phillip’s anticipation for the Time Out camp each year and its activities, the joy of forming lasting friendships, and his achievements, all reflect the irreplaceable value of the PWSA Victoria’s work and the impact the organisation has on those living with PWS.

As we remember Phillip and the indelible mark PWSA Victoria left on his life, we invite you to contribute in his honor. Donations will ensure the continuation of this vital work, helping to sustain programs that offer not just support but hope and a sense of belonging for those affected by PWS. Phillip’s legacy of courage, friendship, and independence, facilitated by PWSA Victoria, reminds us of the power of community and the essential need for comprehensive support beyond the realms of scientific research.

Together, we can ensure that the vital services and support systems provided by PWSA Victoria continue to touch lives, build communities, and offer a safe haven for individuals to truly be themselves. Your support can make all the difference.

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We are excited to launch this year’s Awareness collection ahead of PWS Awareness month in May. This year, we’re embracing a powerful message that resonates deeply for every single…

Read More

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Easter is a time for celebration, joy, and family gatherings. However, for those in the Prader-Willi Syndrome (PWS) community, traditional Easter egg hunts featuring chocolate treats can pose challenges….

Read More

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This conference, themed “United in Hope,” signifies an unprecedented collaboration and is expected to become the most significant international gathering focused on PWS to date.

Read More

The post Finding Purpose and Belonging appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

The Foundation for Prader-Willi Research (FPWR) has once again stepped forward as a beacon of hope for families and individuals affected by Prader-Willi Syndrome (PWS). In a groundbreaking initiative, Dr. Giles Yeo and his team at the University of Cambridge have embarked on a quest to unravel the complexities of appetite control in those with PWS, thanks to the generous funding of $161,947 from FPWR.

Prader-Willi Syndrome is a genetic condition marked by an insatiable hunger, leading to chronic overeating and life-threatening obesity. Until now, the intricate workings of the brain responsible for this relentless appetite have been cloaked in mystery, primarily due to the challenges of studying the human hypothalamus—a brain region central to regulating hunger.

With the partnership of Autism BrainNet, Dr. Yeo’s team has gained unprecedented access to hypothalamic tissue samples from individuals who lived with PWS. Leveraging cutting-edge single-cell sequencing technology, they aim to create a detailed map of the hypothalamus, revealing how it differs in those with PWS compared to those without the syndrome.

This research is not just about advancing scientific knowledge. It’s a step towards tangible benefits for the PWS community. The data amassed will be made freely available, serving as a vital resource for researchers worldwide. It’s hoped that by comparing the hypothalamic cells from PWS-affected individuals with those from unaffected donors, scientists can pinpoint the malfunctioning circuits that trigger uncontrolled eating.

The FPWR’s commitment to fostering research that directly impacts the lives of those with PWS is evident in this project. It’s a testament to their dedication that families touched by PWS can look forward to a future where the challenges they face are not just understood, but also effectively managed.

You can read more about this incredible work here

The post Unlocking the Mysteries of Hunger appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Young Carers will provide care for a loved one in varying capacities. This could range from emotional support and assistance with household activities, lifting, dressing and feeding.

Supporting the siblings within our PWS community who have a brother or sister living with Prader-Willi Syndrome (PWS) is a vital and often overlooked aspect of our mission.

These siblings face unique challenges and emotions that can easily be overshadowed by the intense focus on caring for individuals with PWS and the understandable overwhelming surge of emotions experienced by parents.

However, recognising and addressing the needs of these siblings is paramount. By offering them support, understanding, and tailored resources, we not only validate their experiences but also provide them with the tools to navigate the complexities of their family dynamics. It is our belief that by focusing on the holistic well-being of every member of our community, including siblings, we can foster a more inclusive, empathetic, and resilient environment for all.

Australian siblings of PWS individuals, your time is now. It’s your turn to step into the spotlight! PWSA Victoria, in collaboration with Carer’s Gateway Young Carers and Little Dreamers, is thrilled to announce a groundbreaking 8-week Online Sibling Peer Support Program, tailored for YOU. Kicking off in 2024, join us to navigate the shared journey, celebrate your role, and connect with those who truly understand. Your support network awaits – let’s thrive together!

So, after a considerable wait, our Sibling Support Programs are on the horizon, with the launch scheduled for Term 1 of 2024. We have joined forces with Carer’s Gateway Young Carers and Little Dreamers to establish a comprehensive support network for the siblings within our community.

An 8-week Online Sibling Peer Support Program aimed at Siblings aged up to 25 years of age. The Program is led by two seasoned staff members from Carer’s Gateway and Little Dreamers, will kick off in February.

This program will be accessible to siblings across Australia.

Recognising the unique challenges faced by siblings of individuals with PWS, Carer’s Gateway and Little Dreamers have agreed to host a dedicated PWS-specific group.

Additionally, PWSA Vic encourages siblings to explore membership in general groups and engage in the broader array of experiences offered by Little Dreamers.

If this initiative proves successful, we plan to introduce additional programs following the initial pilot, further expanding our support offerings to siblings.

The post Nationwide Support: PWSA Victoria’s Groundbreaking Sibling Support Program Launches! appeared first on Prader-Willi Syndrome Association of Victoria, Australia.