Prader-Willi Syndrome Association UK

Are you a parent of an adult with Prader-Willi Syndrome and passionate about using your experience to make a difference? PWSA UK is seeking a dedicated trustee with lived experience to help shape our future and bring the unique needs of adults with PWS to the heart of our work. As a small, dedicated charity, PWSA UK offers lifelong support to those affected by this rare genetic condition. PWS can cause a profound and uncontrollable drive to eat, alongside physical and learning challenges. Our work ranges from providing a helpline and a knowledge hub to hosting community events, training professionals, and supporting groundbreaking research. At PWSA UK, we aim to ensure that those with PWS and their families can live life to the fullest. Our plans include expanding our support for adults with PWS, improving quality of life, and understanding the experiences and needs of the community. To truly reflect these voices, we’re calling for a trustee who’s a parent of an adult with PWS to join us. This role involves attending four board meetings a year, working closely with our "Our Way of Life" (OWL) focus group, and helping shape our strategy to support the diverse PWS community. We especially encourage parents from underrepresented regions and backgrounds to apply, as we work toward a board that fully reflects the PWS community. Interested in contributing? Reach out to our CEO, Jackie Lodge, at jlodge@pwsa.co.uk.

Ian and Catherine conclude their maximum terms as trustees. Both have been instrumental in supporting PWSA UK, sharing invaluable experience and dedication that has greatly strengthened our work. In recognition of their lasting impact, we are thrilled to announce Ian and Catherine as lifetime honorary vice presidents—a testament to their commitment to our community. ✨ Ian has also received the John Booth Award for his exceptional voluntary service to PWSA UK. We are deeply grateful for his dedication over the years! ✨ Catherine has joined the PWSA UK staff team as Engagement Manager, where she will continue to enhance our work with her professional expertise, amplifying our impact both within the PWS community and beyond. Please join us in celebrating Ian and Catherine’s contributions.

You might have spotted some new faces in our Trustee Week post yesterday! We’re thrilled to welcome three fantastic additions to our board, appointed at our AGM last week: Fiona, Becky, and Laura! ✨ Fiona (top right) is a mum of two, with a son diagnosed with PWS at just 3 weeks old. Her journey with PWSA UK began when her son was 6 months old—when she first connected one-to-one with another PWS parent. Reflecting on that life-changing support, Fiona says, "I will always be grateful for that conversation." Now, she’s joined the board to ensure families get the support they need today and in the future. "I’m glad I can contribute as a member of the board," she shares. ✨ Becky (bottom left) is also a mum to a son diagnosed with PWS as an infant. She describes PWSA UK as a "lifeline" during those uncertain early days. With over 10 years in the charity sector, Becky brings expertise in systems, data analysis, and insight to support our association’s work. ✨ Laura (bottom right) is the VP of Global Corporate Affairs at Lottoland and has supported PWSA through various PR campaigns. Though she doesn’t have a personal connection to PWS, her Group CEO’s grandson, Ollie, inspired her to help. With strengths in PR, government relations, campaign activation, and events, Laura says, "I hope that these skills will help drive and deliver on the charity’s strategy over the coming months and years." Please join us in welcoming Fiona, Becky, and Laura! We’re so grateful for their dedication and expertise as we work together to support everyone impacted by PWS.

Welcome on board Becky ... looking forward to working with you.

Celebrating our Trustees This Trustee Week, we want to shine a spotlight on our incredible trustees and raise awareness of the vital role they play. Charity trustees are the guiding force that keeps a charity true to its mission, ensuring we serve our community effectively and with integrity. At PWSA UK, our trustees attend board meetings four times a year, actively engaging in committees, guiding key decisions, and staying accountable to our members. They connect with the community in person and online, staying close to the heart of our mission. Their dedication ensures we use our resources wisely, operate within legal guidelines, and always prioritize the needs of those we support. Thank you to our trustees for your commitment and compassion! #trusteeweek #thankyou

SAVE THE DATE! so pleased to announce that Prader-Willi Syndrome Association UK and our colleagues in the US will be hosting a webinar about PWS Ageing Research and Health Updates. I have been working closely with Barb Dorn, a retired Registered Nurse, mother of a 39-year-old with PWS and former President of PWSA USA, and Lynn Garrick (Nurse Lynn), the Medical & Research Coordinator for PWSA USA. She is also a mother of five, including a son with PWS. With her extensive background in nursing and support services for the PWS community, she serves on several professional boards, including IPWSO. Both have a wealth of experience in PWS care to host a 2-part webinar for professionals in care settings who support adults with Prader-Willi Syndrome. The webinar will share valuable insights into the latest research and strategies for supporting ageing adults with PWS. We will cover: Current research on PWS and aging Common health concerns raised by caregivers Risk factors, screening tools, and management strategies When: 🗓 Part 1: Friday, 15th November, 2:00 PM 🗓 Part 2: Tuesday, 19th November, 2:00 PM If this interests you, please email @PWSA UK at admin@pwsa.co.uk to register by the 13th of November

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.