As PWS Awareness Month draws to a close, we want to take a moment to say an enormous thank you to everyone who helped make May such a huge success. From daily social media engagement to nationwide (and even global!) Go Orange events, this past month has been a powerful reminder of what we can achieve when we come together with one goal: to eliminate the challenges of Prader-Willi Syndrome.
A Month of Awareness and Action
Our daily social media posts throughout May were a hit! Packed with facts, and helpful information, they were widely liked and shared — a big thank you to all of you who supported, engaged, and helped spread the word. We hope you enjoyed them as much as we enjoyed putting them together!
Go Orange Day – A Sea of Support
Go Orange Day on 30th May was a resounding success. Social media was flooded with orange — from individuals to schools and entire communities showing their support. Many schools even held their Go Orange Days early before the half-term break. Thank you to everyone who took part — your enthusiasm was felt far and wide!
Stronger Together: Collaboration in Action
We’ve been proud to work closely with PWSA UK under our joint “Stronger Together” banner on several impactful initiatives:
▪︎ Move It May got us all moving, thanks to the amazing support of Lucy Wyndham-Reed, Emma Golds, Krazy K, and Joakim Valsinger. Their simple, inclusive exercise routines helped care homes, schools, and families across the UK get active in support of PWS awareness.
▪︎ Glow Orange was truly spectacular, with 18 landmarks across the UK lighting up orange on 30th May. The stunning visuals caught the attention of the national media and raised awareness on a whole new scale.
▪︎ Our landmark House of Lords event was a major step forward, giving us the chance to educate policymakers about PWS and the urgent need for support and research. The response was overwhelmingly positive, and we’ve made valuable connections to continue this vital work.
Research and Regulatory Updates
We were also thrilled to share the exciting news that the DCCR application has been submitted to the European Medicines Agency (EMA). While this doesn’t directly impact UK approval yet, it is a clear sign that Soleno Therapeutics is making real progress — and remains committed to bringing DCCR to the UK. The experience with EMA will help support future applications to bodies like the MHRA.
What’s Next?
Although Awareness Month is over, our work continues at pace.
▪︎ We’re following up on new contacts and conversations from May to push forward the case for PWS research and drug approval in the UK.
▪︎ We’re eagerly awaiting updates on clinical trials, including:
> ARD-101 for hyperphagia by Artvark Therapeutics
> Pitolisant for excessive daytime sleepiness by Harmony Biosciences
> Phase 2 trials with ConSynance
> Continued collaboration with Soleno on DCCR
> And the final phase 3 trial results from Arcadia — thank you to everyone who has participated!
We’ll keep you posted on trial opportunities and updates, and encourage everyone to take part where possible. Every trial participant brings us closer to change.
Thank You for Being Part of the Change
This month has been a reminder of just how powerful our community is. Whether it’s:
▪︎ Liking and sharing our posts
▪︎ Wearing orange
▪︎ Contacting your MP
▪︎ Fundraising for vital research
Every action counts. Together, we’re building a better future for everyone affected by PWS.
Stay Connected
Don’t miss a beat — join our WhatsApp community for the latest updates and clincal trial information: https://whatsapp.com/channel/0029Vb1WD2JD38COuSTWK72W
Sign up to our mailing list: https://link.fpwr.org.uk/news
Want to get more involved or volunteer with us? Email us at info@fpwr.org.uk
From all of us at FPWR UK: Thank you for making PWS Awareness Month 2025 such a powerful and inspiring success. The journey continues — and we’re so glad to have you with us.
Together, we will eliminate the challenges of PWS.