Supporting all those affected by Prader-Willi Syndrome, a rare condition causing a near-permanent state of hunger, learning & physical disabilities.
Northampton, United Kingdom
Joined September 2010
- Tweets10K
- Following213
- Followers1.4K
- Likes541
PWSA UK retweeted
Got a fantastic ‘pick me up’ yesterday evening with a visit from the main man Jack and my youngest!
Big boost going into Day 4!
shorturl.at/qXk2P
@PWSAUK
Join PWSA UK as a Clinic Outreach Volunteer to support families with PWS. Use your experience to provide guidance, resources, and empathy. Contact us for more information! 🧡
We offer a private Facebook group through the PWSA UK Community Hub, where parents/carers can connect and support each other in a safe space. We know how vital it is to have a strong network, and we're here to help you build those connections. You're not alone.
PWSA UK retweeted
As part of training for RAB ride (Lands End-John O’Groats) I tried back-back 100 milers. It’s a long way & pretty sore but completed it yesterday.
Only 6 weeks to go till start, will unashamedly be DMing friends to raise as much as possible @PWSAUK
shorturl.at/qXk2P
🙏
PWSA UK retweeted
We are pleased to invite you to our research update. Four pharmaceutical companies will present the latest progress in their clinical trials in the UK with a Q&A opportunity afterwards. Join us via Zoom on 10th Sept at 7:30pm.
Reserve your spot at
🔗 bit.ly/3A6liXp
🎉Join us at PWSA UK's Community Day!🎉 🗓️ Sun, Jul 28, 2024 ⏰ 11:00 AM 📍 Waterways Farm, East Harling
Fun activities & FREE tickets! Register now. 🍉🧺 #PWSACommunityDay #EastHarlingFun
Continuing celebrating our volunteers. Jackie, our CEO, shares some words on why we wouldn’t be where we are today without their support.
PWSA UK retweeted
@andymorrell01 is taking on the huge challenge of cycling 980 miles from Lands End to John O'Groats in aid of @PWSAUK 's work done with his godson Jack and other families 🤯 #wxmafc
Let's all support his efforts, donate 👇
🔗 shorturl.at/qXk2P
youtu.be/UpFjIZ1SJw0?si=2F4m…
Our work would not be possible without their support, in fact we would not be here without volunteers. PWSA UK was established by parents who recognised the need for support for the PWS community and is still governed by volunteer trustees who share the founder’s commitment.
Today is Awareness Day. Today is about sharing your journey, your ups and your downs, and most importantly raising awareness for this syndrome.
Today our team are joining you in orange and tonight landmarks across the UK will be glowing orange #GlowOrangeForPWS
Oh, we do like to be beside the seaside! Why not join us for our PWS community weekend at Southview Holiday Park, in Skegness, from 17th-20th May? Or you can just join us for the day at Natureland Seal Sanctuary on the 18th.
Find out more and book via pwsa.co.uk/events
CLOSES TOMORROW! Please nominate us for a £5,000 donation - it only takes a couple of minutes. Thank you!
Please nominate PWSA UK to receive a £5,000 donation through the #MovementForGood's Health and Wellbeing Special Draw, which is open from today until Friday (26th April). Your support could really make a difference - thank you! #PraderWilliSyndrome
health.movementforgood.com/#…
All funds raised from PWS Stronger Together's #MoveItMay campaign will go towards important research into ageing in #PraderWilliSyndrome - an area we still know very little about! Find out more at pwsstrongertogether.co.uk.
More knowledge and understanding of PWS means many people with PWS are living longer,which is fantastic news. The more worrying side is this is a very under-researched area. All money from our #MoveItMay campaign will go to this important research.
#pwsstrongertogether #moveitmay
This evening marks the start of the Jewish festival of Passover. Chag Pesach sameach to everyone in our #PraderWilliSyndrome community who is celebrating!
#Passover #ChagPesachSameach #HappyPassover
Please nominate PWSA UK to receive a £5,000 donation through the #MovementForGood's Health and Wellbeing Special Draw, which is open from today until Friday (26th April). Your support could really make a difference - thank you! #PraderWilliSyndrome
health.movementforgood.com/#…
Thank you to everyone who attended our first ever face-to-face conference for adults with #PraderWilliSyndrome on Saturday. We had a fantastic time and we hope you did too!
Good luck to our 9 fantastic runners taking part in the @LondonMarathon on Sunday (21st April) - and if you'd like to join us in cheering them along on the day, we will be at mile 20. We'd love to see you there!
#LondonMarathon #PraderWilliSyndrome
30 locations are going to ‘Glow Orange’ on 31st May. Are any near you? We’d love to have families and supporters at each of the locations if possible, so please let us know if you are hoping to attend one of the #GlowOrange locations
#pwsstrongertogether #moveitmay
