FPWR UK - Foundation for Prader-Willi Research UK

21/06/2026

Happy Father's Day to all the amazing Daddys in our PWS community! We hope you all have a lovely day! 🩵

20/06/2026

PeeWee’s Adventures have taken him to Legoland Discovery Centre Manchester (ldcmanchester) where he had lots of fun and even made a giraffe friend?

Have you taken your peewee on any adventures? We’d love to see- send us your pictures via messenger or to [email protected]

Not got a peewee yet? No problem- he’s for sale in our online shop with other great FPWR UK merchandise at www.fpwr.org.uk/shop

19/06/2026

💙 Would you take on the TCS London Marathon as part of Team FPWR UK? 💙

We’re now starting to select our team for the 2027 TCS London Marathon weekend and if this is something you’d be interested in, we’d love to hear from you. Whether you’re an experienced runner or building up to your first marathon, we are looking for enthusiastic supporters to take on the challenge for PWS Research.

If this sounds like you, please fill in our inital contact form here:�🔗 https://link.fpwr.org.uk/london-marathon

Please feel free to share or tag someone who might like to get involved!

Go Team Research 💙🏆

19/06/2026

Exciting progress update in Prader- Willi Syndrome Research 💙

The first participant has now been dosed in a Phase 2 clinical trial of CTSI-500, a potential new treatment targeting hyperphagia and neurobehavioural challenges in PWS.

This investigational therapy aims to rebalance key brain chemicals involved in hunger, mood and impulse control, areas that greatly affect daily life for individuals with PWS.

You can read their press release at https://link.fpwr.org.uk/CTSI500-launches-phase2a

You can also catch up on the basics of CTSI-500 from when ConSynance joined PWS Stronger Together on an information webinar. The webinar we’ve entitled Further Updates can be found at https://www.pwsstrongertogether.co.uk/Webinars and ConSynance feature from 39 minutes to 46 minutes.

18/06/2026

🎉 Great news! Our glossary is now online! 🎉

Understanding the world of Prader-Willi syndrome, research and clinical trials can sometimes feel overwhelming, but we’re hoping this helps 💙

📘 Our brand-new online glossary is a helpful, easy-to-use resource explaining key terms and acronyms from the PWS, research and clinical trial world.

Explore it at https://fpwr.org.uk/glossary

We’d love your help to keep it growing! If there’s a term you think we should include, let us know at [email protected]

17/06/2026

Excited for the England game tonight? Still buzzing for Scotland’s victory? Or just love the World Cup in general?

Why not have some World Cup fun and support our charity at the same time? For just £2 a player you can play our guess the player competition by heading to https://link.fpwr.org.uk/worldcup and then letting us know who you would like out of the remaining players (or ask us to choose for you)

Winner will receive half of the prize pot which could be up to £100 if all names sell. The winning name will be drawn when all names sell or on World Cup final day on 19th July ⚽️

Good luck everyone 💙

⚽ Guess the World Cup Player Competition! ⚽

We’re getting excited for the FIFA World Cup and would love for you to get involved in our fun fundraiser for just £2 per player – and you can have as many goes as you like!

It’s easy to take part:
1. Choose your players from the available grid
2. Pay quickly and easily here: https://link.fpwr.org.uk/worldcup
3. Secure your picks by messaging us or commenting below (or ask us to choose for you)�
One lucky winner will be drawn at random and will take home 50% of the total pot, with the other 50% going to support FPWR UK and PWS Research.

⭐ If the board sells out, you could win £100! ⭐️

The draw will either take place once the card is full or on Final Day (July 11th) whichever is soonest.

Don’t miss your chance – get your picks in early and good luck! 🍀⚽

17/06/2026

⭐️ Promising new research for Prader-Willi syndrome ⭐️

Rhythm Pharmaceuticals have shared encouraging six-month interim data from their Phase 2 trial of setmelanotide, a treatment targeting the MC4R pathway which aims to address the underlying causes of hyperphagia in PWS.

The early findings suggest potential improvements in:
✅ Hunger and food-related behaviours�✅ Body composition�✅ Emotional wellbeing and behaviour

While these results are still early and based on a small group, they offer real hope for a treatment already approved for other conditions and highlights the importance of continued research.

Take a look at our infographic for a quick overview of the findings, or read Rhythms’ official press release at https://ir.rhythmtx.com/news-releases/news-release-details/rhythm-pharmaceuticals-presents-positive-interim-six-month-data

16/06/2026

PeeWee loves going on his travels! Do you have a holiday booked? A day out? A hospital appointment? Why not take PeeWee along! Share the awareness to PWS Research and get involved with the fun with 🦒

If you don't have a PeeWee, you can purchase one via our website shop 😁

15/06/2026

In today’s spotlight we have Bethanie who has recently graduated Children’s University with flying colours!

Children’s University is available for primary aged children to recognise their extra-curricula work by counting hours to reach different levels of the awards. Bethanie smashed through the levels and reached silver degree level which means she has completed a fantastic 365 extra hours!

There is also more… on top of the silver degree Bethanie was also was awarded an outstanding achievement award for her school 💙🏆

This is amazing Bethanie, well done from everyone at FPWR UK

If you have a special someone you’d like to see if our spotlight we’d love to hear from you. Please message us or email [email protected]

14/06/2026

Do you live down south? Are you free on the 1st of August? Are you looking for something to do? Why not join in the One Small Step down Southsea!
A walk from one end of the beach to the other! To raise awareness and funds for research!
You can sign up using this link: https://www.justgiving.com/page/onesmallstepsouthsea3?utm_medium=FR&utm_source=CL

🦒