We are delighted to announce that the Family weekend in 2023 will be in the Garryvoe Hotel in East Cork form the 13th-15th October. The O'Neill family are busy planning an amazing weekend for us all! The first thing you need to do is to book your room directly with the hotel- details can be … Continue reading Family Weekend 2023
The Countdown to Christmas is a lovely tradition to have in your home. Below are some non-food idea. If you have your own, please share with us. This is a really lovely tradition that you can build on each year. You might not have the 24 Christmas books to start with but you can mix … Continue reading Countdown to Christmas Ideas!
It's almost here! Have you sent Emma, PWSAI Secretary a photo of your VIP? You can email email@example.com or WhatsApp Emma/Facebook messenger. The photo will be used in the PWSAI Celebration Slideshow during the Gala dinner on Saturday evening. If your person with PWS would like to stay out of the limelight, please let Emma … Continue reading PWSAI Family Weekend 2022
Hi Everyone, The PWSAI AGM 2022 took place on the 8th September 2022. The Annual Report is located below. A reminder that the annual report covers the fiscal year ending 31.10.2021 Annual Report 2021Download The Board of PWSAI going forward is: Chairperson: Rory Tierney, Vice Chairperson: Derek Corrigan, Treasurer: Sean Kelly, Secretary: Emma Walsh, Board … Continue reading PWSAI AGM 2022 – update
Hello! Please fill in the form below if you are attending the family weekend! Not long to go now!
As I write this, it's 26 days until the The IPWSO conference begins in Limerick, Ireland!! Have you registered? Do you have any questions? Don't hesitate to get in touch with Gary or Emma. We're looking forward to seeing you in Limerick!
What is Prader-Willi Syndrome? Prader-Willi syndrome (PWS) is a rare, complex genetic disorder that affects both males and females from birth and throughout their lives. It causes low muscle tone with consequent motor developmental delays, a mild to moderate learning difficulty, and emotional and social immaturity, which can lead to challenging behaviours. During childhood, an … Continue reading What is Prader-Willi Syndrome?
Given the huge success of running this event virtually and ensuring that everyone can take part, no matter where you are in the world... it's back for 2022! This year the event will take place on the last weekend of May to give everyone you know a chance to take part. We at PWS5k HQ … Continue reading PWS 5K 2022
The University of Surrey is inviting parents and carers of children or young people with PWS to take part in a research project. This project forms part of the Cerebra Network for Neurodevelopmental Disorders’ multi-site research collaboration across University of Birmingham, Aston University, University of Surrey, and University of Warwick. The research focuses on understanding … Continue reading Research Opportunity for Individuals with PWS
February 2022: To date 31 families have completed the first stage of our PWS research study. A big thank you to all those families. The information that you are sharing with us about your PWS family members is invaluable to our research. We have recently finished analysing the data from the PWS caregivers and healthcare professionals … Continue reading Research Opportunity: The Neurodevelopment Lab at TCD