PWS Stronger Together

We are pleased to invite you to an exclusive research update event. Four leading pharmaceutical companies will present the latest progress in their clinical trials in the UK. Agenda Overview: 1. Aardvark will share developments on ARD-101 (Hyperphagia) 2. Acadia Pharmaceuticals will provide updates on Carbetocin (Hyperphagia) 3. Harmony Biosciences will discuss advancements with Pitolisant (excessive daytime sleepiness) 4. Soleno Therapeutics will explain progress on DCCR (Hyperphagia) Following the presentations, a brief Q&A session will offer the opportunity to engage directly with the experts behind these groundbreaking studies. Date: 10th September Time: 7:30-8:30pm Location: Zoom Reserve your spot today: https://bit.ly/3A6liXp

🌟 We’re thrilled to share that our first PWS Stronger Together webinar was a great success! 🌟 Helen and Robin teamed up with Prader-Willi Syndrome Association UK and the Foundation for Prader Willi Research UK to explore the world of clinical trials. Here’s what we discussed: 🔍 What are clinical trials? 🤔 Why are they crucial for people with PWS and their families? ✅ Should we participate in one? ⏳ Why do they take so long? And much more... We will be sharing questions from the webinar on our Facebook and Instagram. This is just the beginning! The second webinar is scheduled for September 9th. To register for our next webinar or to watch the recording, visit pwsstrongertogether.co.uk #clinicaltrial #webinar #pws #praderwilliresearch #reseach

Learn more about the COMPASS PWS study for people 5-30 years old with Prader-Willi syndrome (PWS) who have hyperphagia. https://lnkd.in/echFCABU The study is being done to test a drug called carbetocin nasal spray (or ACP-101). Carbetocin nasal spray binds to oxytocin receptors with greater sensitivity than oxytocin, a naturally occurring hormone. In the study, carbetocin nasal spray or placebo is inhaled through the nose three times each day. This study will last approximately 19 weeks. It will involve a maximum of 5 visits to the study centre, as well as up to 2 telephone or video calls.

We did it! Thanks to all of your #moveitmay challenges we made the virtual journey around our #gloworange landmarks. All together we accumulated over 59,000 minutes! We also raised £14,103.77 in the process. We want to say a big thank you to everyone who took part in challenges and to all of your sponsors and donors. This is amazing. To add to this 40 locations lit up Orange on 31st May, National and Local press covered the story speeding awareness of PWS and we’ve received messages from all over the world congratulating the UK on #GlowOrange Well done everyone!

We made national news! Thank you to everyone who has supported PWS Awareness Month and thank you to each of the 37 locations which glowed orange for PWS. https://lnkd.in/gq_BgixZ

We made national news! Thank you to everyone who has supported PWS Awareness Month and thank you to each of the 37 locations which glowed orange for PWS. https://lnkd.in/gq_BgixZ

Today is #gloworangeforpws and here is the list of locations planning to Glow Orange around dusk/8:30pm. Please note the new location that has been added- Edinburgh International Conference Building. For those of you who cannot attend a location we’d love you to Glow Orange at home and share your photos with us. You can message us on here or via email to info@pwsstrongertogether.co.uk or send them to FPWR UK - Foundation for Prader-Willi Research UK and Prader-Willi Syndrome Association UK.

PWS & Ageing research is relevant to all ages. As the number of people with PWS living longer increases, it is unclear what medical problems people might face as they enter their 40s, 50s,60s and beyond. We need to know the health issues people with PWS face as they get older in order to be prepared to treat them and to focus more research on these areas. By taking part in Move it May or donating to PWS Stronger Together you are helping to fund this important research. To see more on how you can help please visit https://lnkd.in/e3VCzKYb #pwsstrongertogether #moveitmay #pws #praderwillisyndromeawareness

PWS & Ageing research is relevant to all ages. As the number of people with PWS living longer increases, it is unclear what medical problems people might face as they enter their 40s, 50s,60s and beyond. We need to know the health issues people with PWS face as they get older in order to be prepared to treat them and to focus more research on these areas. By taking part in Move it May or donating to PWS Stronger Together you are helping to fund this important research. To see more on how you can help please visit https://lnkd.in/e3VCzKYb #pwsstrongertogether #moveitmay #pws #praderwillisyndromeawareness

How are you doing Move it May? How’s it going? Any type of movement counts from tummy time to trampoline, dancing to dog walking, Pilates to playing at the park, it all counts, we are counting the time spent. Can we all add up to the required 59,000 minutes to get around our GlowOrange landmarks?  #pwsstrongertogether #MoveItMay #MoveItMayForPWS #GlowOrange #GlowOrangeForPWS