In 2018, thanks to the generosity of UK fundraisers, FPWR UK proudly funded a groundbreaking research project titled “Improving Social Functioning in Prader-Willi Syndrome”. Led by Dr. Elizabeth Roof and her team at Vanderbilt University, this study aimed to address a critical challenge faced by many individuals with Prader-Willi syndrome (PWS) that being difficulties in social interaction and communication.
Fast forward to today, and that very research has blossomed into a transformative programme known as BOSS—Building Our Social Skills. The BOSS curriculum is now being used to help teens and adults with PWS develop essential social skills, improve peer relationships, and build confidence in everyday interactions.
What makes this journey even more rewarding is seeing the BOSS programme now being delivered in the UK by Prader-Willi Syndrome Association UK (PWSA UK). Eight adults with PWS are currently involved in the first UK BOSS course and whilst this course is currently full we hope to see more courses going ahead in the future following feedback from this one.
The BOSS course is more than just a curriculum—it’s a lifeline for individuals with PWS who often struggle with social isolation. Through structured lessons, role-playing, and guided discussions, participants learn how to navigate social situations, express themselves, and connect with others in meaningful ways.
A Powerful Partnership for Progress
The delivery of this course marks a full-circle moment- research made possible by FPWR UK is now directly benefiting the UK PWS community through the dedicated work of PWSA UK.
We love how this illustrates the complementary roles of two UK charities:
• FPWR UK: Driving forward research that lays the foundation for innovative solutions.
• PWSA UK: Bringing those solutions to life through community support and programme delivery.
Together, they demonstrate how research and support go hand-in-hand to improve the quality of life for people with PWS. It’s a shining example of how donor-funded research can evolve into real-world impact, changing lives not just in theory, but in practice.
As the BOSS programme continues to expand, it’s inspiring to see how a seed planted by UK fundraisers has grown into a global resource, now helping individuals with PWS across the world and right here at home.