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!
PWSAI Family Weekend 2022
It's almost here! Have you sent Emma, PWSAI Secretary a photo of your VIP? You can email firstname.lastname@example.org 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
PWSAI AGM 2022 – update
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
The International PWS conference is just a few weeks away!
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?
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?
PWS 5K 2022
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
Research Opportunity for Individuals with PWS
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
Research Opportunity: The Neurodevelopment Lab at TCD
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
Orange Day for PWS Awareness Day 2022
On Friday 27th May 2022, we are asking everyone to wear orange to help raise awareness of Prader-Willi Syndrome. Below are some materials that might be useful for PWS Awareness Day! Here is a poster to share in your school, club or workplace. Poster for PWS Awareness Day 2022Download In 2021, Henry (age 8) who … Continue reading Orange Day for PWS Awareness Day 2022
IMPORTANT UPDATE TO CONFERENCE REFUND SCHEME for Families in Ireland
IMPORTANT UPDATE TO CONFERENCE REFUND SCHEME - PLEASE READ! April 2022 Dear Families, Having reviewed the increases in cost of living as well as seeking feedback from families, PWSAI have agreed to increase the amount of the refund scheme being offered for the International Conference. We understand this is an important once in a lifetime … Continue reading IMPORTANT UPDATE TO CONFERENCE REFUND SCHEME for Families in Ireland