On Wednesday 14th May 2025 we took Prader-Willi Syndrome to Parliament! What an incredible experience it was sharing the realities of PWS with policymakers and raising awareness of the urgent, unmet needs of those with PWS and their families.
The event was a collaboration with Prader-Willi Syndrome Association UK (PWSA UK) as part of our continuing PWS Stronger Together project and has taken months to plan and prepare for. The actual day went by so fast but was a huge success. We had powerful conversations, shared the latest research, and for me personally I was able to share and discuss my experiences with my daughter Eleanor, my shining inspiration.
We were honoured to have The Rt Hon. Lord Naseby host us at the House of Lords, where we welcomed an incredible group of supporters. Thanks to the overwhelming response from the PWS Community, many MPs attended, alongside medical professionals specialising in PWS, researchers, pharmaceutical representatives, PWS care managers, and PWS families.
We were also deeply moved by Collette Love, who shared the story of her sister with PWS, who has now sadly passed away. Her words were a poignant reminder of why we must continue fighting for better care and medical advancements.
Jackie Lodge, CEO of PWSA UK, and David Jack, Trustee of FPWR UK ,delivered amazing and heartfelt speeches on the challenges of PWS, the urgent and unmet needs in relation to care and support, and the hope that new clinical trials bring. David’s speech highlighted the critical need for research and drug approvals. He spoke not just as an advocate but as a father—sharing his hopes for his daughter Robyn and the bright future that awaits IF, and hopefully WHEN, new treatments become available.
It has been a wonderful opportunity for our charity to work alongside PWSA UK on this event, and for our whole May awareness campaign with our partnership PWS Stronger Together. While FPWR UK focuses on advancing PWS research, and PWSA UK works tirelessly in care and support, our shared mission remains the same – ensuring a better quality of life for everyone affected by PWS, both now and in the future. To work collaboratively and in unison on this goal has been a wonderful opportunity for FPWR UK and, we hope you all agree, beneficial for the whole PWS Community.
I want to say a huge thank you to the FPWR UK team, many of whom were there on the day, but also for all the time and effort they have dedicated to making this day a success. I couldn’t be prouder of the passion, dedication and drive that this team brings. This includes the current team and past volunteers, staff and Trustees too. Our charity marks its 15th anniversary this year and when I look back at that point 15 years ago when I was planning my first One Small Step for my baby girl just so I could be doing ‘something’ to help her future, I couldn’t have imagined that fast forward to the present and we would be advocating at the House of Lords. This milestone proves how far we’ve come, but it also reinforces that the hard work is far from over. Now, we must push forward harder than ever – to ensure that PWS is impossible to ignore.