The Biggest Year Yet for FPWR UK and PWS Research
As we close the chapter on 2025, I find myself reflecting on what an extraordinary year it has been for FPWR UK and the global Prader-Willi syndrome (PWS) community.
It is easy to start a message like this by saying, “This feels like the biggest year yet for our charity and PWS research.” But can we all agree—it truly IS the biggest year yet for FPWR UK and for PWS research! This year was filled with moments of celebration, progress, and yes, a few disappointments—but above all, it was a year that reminded us why we keep pushing forward together.
Celebrating 15 Years of FPWR UK
This year we celebrated our 15th anniversary, marking the incredible journey from that very first One Small Step event in Leeds in August 2010. Every piece of research we have funded since has been powered by parents, carers, and loved ones who refuse to give up hope.
Our celebrations do not stop in 2025 however with two events scheduled for March and April 2026 to mark 15 years since the registration of our charity. With the kind support of our Gold sponsors Soleno Therapeutics and Silver sponsors Aardvark Therapeutics, we’d love to see as many PWS families as possible attend our Family Fun & Research events at Edinburgh Zoo on 29th March and Drayton Manor Resort on 18th April. Through the generous sponsorships the events are free to PWS families and lunch is included. There will be opportunities to learn about PWS research and Clinical Trials, to hear from and speak to researchers and the FPWR UK Team and also lots of time to enjoy the attractions with your family. More news on booking is coming in the new year so please keep an eye on our social media and sign up to our email newsletter at https://link.fpwr.org.uk/news
A Historic Breakthrough
The approval of VYKAT XR in the USA—the very first drug for hyperphagia in PWS, known during trials as DCCR—was truly a landmark moment. While it’s not yet available here in the UK, it stands as powerful proof of what can be achieved when research and advocacy come together.
We’ve been in regular conversations with pharmaceutical companies and regulatory authorities, working hard to pave the way for this treatment (and we hope many more in the future) to be made available to meet the urgent needs of those living with PWS.
As the PWS landscape evolves, FPWR UK has grown too. While funding research remains at our core, we now embrace a broader mission: championing both scientific discovery and the journey that turns breakthroughs into real-life treatments, improving symptoms and quality of life for those living with PWS.
Raising Awareness Where It Matters
In May, we had the privilege of visiting the House of Lords as part of our PWS Stronger Together Partnership with PWSA UK to raise awareness about PWS and the urgent need for treatments. Standing in such a historic setting, speaking on behalf of our loved ones, was a powerful reminder that our voices matter.
This year also saw our PWS Stronger Together partnership with PWSA go from strength to strength. Together, we jointly hosted the House of Lords event, delivered webinars highlighting upcoming clinical trials, and worked collaboratively throughout Awareness Month, from ‘Move it May’ to coming together as a community to ‘Go Orange’ for Awareness Day. With another joint webinar planned in January on Aardvark’s HERO trial and plans already underway for Awareness Month 2026, we are excited about what we can achieve together.
Inspiring Science happening right here in the UK
We were thrilled to recently visit Cambridge University and learn about groundbreaking projects aimed at better understanding PWS and developing new therapies. We also saw exciting research at the University of Bristol, investigating ways to stimulate the hypothalamus to release BDNF—a protein often lacking in people with PWS.
For years, there has been a misconception that PWS research only happens abroad. But with multiple clinical trials and innovative studies underway here in the UK, that couldn’t be further from the truth.
The Ups and Downs of Trials
The excitement of the USA’s approval of VYKAT XR and the plans for worldwide applications for approval were unfortunately counteracted with the disappointing news that Acadia Pharmaceuticals could not move forward with their Carbetocin trial following a review of their Phase 3 results. However, hope remains strong with two UK trials now active: HERO from Aardvark (for their hyperphagia drug trial for ARD101) and TEMPO from Harmony (for their hopeful Excessive Daytime Sleepiness treatment Pitolisant). These studies represent new opportunities for progress, and we’ll keep supporting families and researchers every step of the way.
2025 Research Funding
We’re proud to have solely funded Dr Moine’s DGKK research project this year. You can read more in our news blog on our website at www.fpwr.org.uk/dgkk but we are extremely excited to have been able to solely fund this research which is exploring exciting new pathways for treatment. Your support makes this possible and we are so grateful to each and every fundraiser and donor who allows studies like this to take place.
Welcoming Our New Patron
Within FPWR UK we were thrilled this year to welcome Manchester United and England footballer Ella Toone as our new patron. Her support means so much to our community and helps us raise awareness far and wide.
Businesses Making a Difference
From Gravis Capital’s incredible donation and Lunch & Learn event, to the amazing donors in our auction, and the companies and workplaces that provided match funding, workplace events and charity payroll schemes- we are so grateful. These contributions keep research moving forward and hope alive.
Looking Ahead to 2026
Our 15th celebrations continue into next year, and we hope to see you all at our Edinburgh Zoo and Drayton Manor events.
We are also excited to support our incredible runners in the London and Paris Marathons, and can’t wait to see what challenges and fundraisers you can all think of. Please remember that our team are always happy to help in any way we can, even if it’s just an idea you have at this stage, please get in touch and we’d love to help.
This year’s three UK One Small Step events were big successes, and we’d love to see them flourish like in the USA, where they smashed their target, raising over $325,000 for PWS research! If you’d be interested in having a One Small Step event near you please get in touch with our team via info@fpwr.org.uk or dropping a message on our social media channels as we’d love to expand these events far and wide across the UK. It was a One Small Step I hosted in Leeds that became FPWR UK, but the initial intention was to ‘do something’ to help my then baby girl. Scientists are doing incredible work, but they need financial support—and that’s where we, as parents, family members, and friends, can make a huge difference.
As Chairperson of FPWR UK, and more importantly as a parent, I want to say this: we understand the frustrations, the urgency, and the longing for better care and treatments. Most of our team are family members of someone with PWS (and the one person who isn’t, has truly taken PWS to heart). We live this journey alongside you, and that’s what drives us to keep fighting for progress.
Thank you for walking this path with us. Here’s to a 2026 filled with hope, breakthroughs, and continued strength as a community. .
Warm wishes,
Catherine Shaw
Chairperson, FPWR UK