Prader-Willi Syndrome Association UK

I’m happy to share that I've been appointed a trustee on the board at the Prader-Willi Syndrome Association UK. I'm excited to be able to give back to a cause so close to my heart. https://lnkd.in/eAydPhUi

Living with a rare and complex condition like PWS, or supporting someone who does, can be incredibly challenging, especially without the right support in place. Given its rarity, many healthcare professionals may never have encountered someone with PWS before this makes understanding the condition crucial for individuals with PWS and their families. Having this knowledge empowers them to advocate for their health needs and manage the condition more effectively. Since PWS can present in various ways and its progression is often unpredictable, there’s no “one size fits all” approach. Tailored support and a deep understanding of PWS are essential in navigating this journey. 

🚨 New FREE resource! 🚨   We’ve partnered with Nutrition and Diet Resources UK (NDR-UK) to create Practical Portions—an easy-to-use guide to help calculate the right portions for people with PWS, ensuring they meet their nutritional needs while maintaining a healthy weight.   Each pack includes 5 copies, so you can share them with family members and carers for extra support. 💛   Pre-orders are now open, with deliveries starting early November. Grab yours for free today! 👇

We have held 3 community weekends, and multiple community days this year and we have more planned for 2025! Adults with PWS have shared that participating in PWSA UK events has helped them feel more confident meeting new people, experiencing happiness, and gaining a sense of belonging. Our events are designed to create a fun, judgement-free environment where everyone can truly be themselves. One participant said it best: “At the PWSA UK weekend event, it felt like being accepted. They accepted me for who I am. It’s helpful when you feel accepted.” We see similar positive changes in children and young people, too. Many parents and carers have noted that these events help their children feel part of a community and form close friendships—connections that often didn’t happen in other settings, like school. We’re here to support, connect, and celebrate everyone in our PWS community.

Having a deeper understanding of Prader-Willi Syndrome (PWS) can significantly reduce anxiety for both individuals with PWS and their families. This knowledge empowers them to better navigate the challenges the condition presents. Many parents and carers have shared that they feel more equipped to support their loved ones at home and more confident in advocating for better care. Our research shows that many family members of people with PWS often feel they possess more knowledge about the condition than the health professionals they encounter. In some cases, the support and information provided by PWSA UK have even led to earlier diagnoses, making a crucial difference in the lives of those affected. 💙

🌟 My Amazing Daughter's Journey with PWS 🌟 I can hardly believe it—my incredible daughter is now 23 years old! Our journey with Prader-Willi Syndrome (PWS) began when she was just seven weeks old. I still remember how overwhelming it was when we received her diagnosis. We were handed an A4 photocopied sheet with an alarming and frankly inaccurate article. That was it. No real guidance, no support—we were on our own, feeling completely isolated and in shock. Back then, the only place to find information was the library. But somehow, we discovered PWSA UK. What started with a few friendly and supportive phone calls eventually led us to attend our first conference in Derby just seven months later. It was a turning point for our family. PWSA UK has been invaluable in our journey, providing the support and information we needed to give our daughter the best possible start. Thanks to them, we were able to get her on growth hormone treatment at a very young age—a decision that made a huge difference in her life. Our family’s journey with PWSA UK continues to this day. We’ve made lifelong friends and gained so much knowledge and support. There’s a true sense of family and community within PWSA UK, and it has been a lifeline for us. Today, the future for people with PWS is so much brighter. There’s more information, research, and collaboration within the community than ever before. The next generation has even more potential and can look forward to positive outcomes. But the work isn’t done. The PWSA UK will need to continue adapting to new challenges and changes, and we’ll keep working tirelessly to ensure that people with PWS can achieve their full potential in life.

To support our PWS community, we: Provide advice, support, and essential services to individuals living with PWS and their families. Raise awareness about PWS, especially among professionals in health, education, and social care, ensuring they have the tools and knowledge to better support those with PWS. Actively support research efforts into PWS and its impact on lives. Founded over 40 years ago by parents of children with PWS, our association began at a time when there was little information, understanding, or support. As medical care has evolved, people with PWS are now living longer, and PWSA UK has grown and adapted to meet the changing needs of our community. We’re here for you every step of the way. 

Our Family Weekends and Days Out are cherished for creating a safe and supportive environment where friendships naturally blossom among parents, adults, and children with PWS. These connections often extend beyond the events, continuing through online or in-person contact. It's all about building lasting bonds and a strong, supportive community. 

Be a compassionate touch at the heart of PWS clinics. As an Outreach Volunteer, you’ll play a vital role in connecting parents and carers with the support and resources offered by PWSA UK. This position is for those with personal experience of PWS, whether you're a parent, grandparent, or sibling, who can offer empathy and understanding. What Will You Do? As a Clinic-Based Outreach Volunteer, you will: Attend PWS clinics at designated hospitals, working alongside healthcare professionals. Provide non-medical support and information to parents and carers attending the clinic. Guide families towards additional resources and support offered by PWSA UK. Help raise awareness about PWSA UK and encourage membership. Commitment and Support: Attendance: Commit to attending clinics monthly or quarterly, as agreed with your PWS Specialist Advisor. Training: Participate in our comprehensive training and induction program, including ongoing training sessions. Support: Regular communication with your dedicated PWS Specialist Advisor, along with group supervision to ensure you feel confident and supported in your role. What We Expect: Adherence to PWSA UK’s policies, including confidentiality and safeguarding. Reliable attendance and communication. Respect for personal boundaries while representing PWSA UK. Why Join Us? Make a Difference: Your lived experience and compassionate presence can make a significant impact on families navigating PWS. Training and Development: We provide all the training you need to thrive in this role. Support: Enjoy ongoing support from your PWS Specialist Advisor and fellow volunteers. We are currently piloting this role at clinics in Brighton, Chelsea & Westminster, Birmingham, and Leeds. If you’re interested in joining us and making a real difference, please contact Wendy Thomas, our Volunteer Development Officer, at wthomas@pwsa.co.uk. Join us in providing crucial support to families and carers. Your experience and dedication can bring hope and guidance to those who need it most. 🧡 Note: Successful applicants will need to provide references and undergo a DBS check.  

Living with PWS can be challenging, especially when there’s a lack of understanding around the condition. The stigma associated with learning disabilities, neurodivergence, and the need for routine and food management can make it difficult for families to socialise outside their homes. Because PWS is so rare, many people affected by it—and their families—may never meet others who truly understand their experiences. This can feel incredibly isolating. Additionally, those with PWS may find it hard to interact with others and make friends. We recognise these challenges and are here to support you in finding connection and understanding.