Always know there is someone to talk to for advice, support or just a conversation with a person who gets it..
Are you in the 2022?
Sign up here https://videopress.com/v/erAa6Ewm?resizeToParent=true&cover=true&preloadContent=metadata Are you in the 2022? 2022 is a huge year for PWSAI In July we will host the International Prader Willi Syndrome conference. To celebrate this once in a lifetime opportunity we want to get two thousand and twenty two people to move with us in 2022. Do as much or … Continue reading Are you in the 2022?
Christmas Tips
Christmas is almost here and there's no point in re-inventing the wheel, the PWS Association in New Zealand shared the below tips and they're really useful. The only thing I'll add is from a personal point of view. This will be our tenth Christmas with our son with PWS. Christmas has evolved to suit him … Continue reading Christmas Tips
Happy Halloween
Love it or loathe it? Halloween is not for everyone but I've always had really fond memories of it from my childhood. When my son with PWS was born, Halloween was the first big event that we came to after his diagnosis. I remember his first Halloween thinking how will we manage this event as … Continue reading Happy Halloween
PWS in the Press 2021
A huge thank you to Michelle Rousseau, mum to Henri for doing an awareness piece. Thank you Michelle, it takes a lot to share your personal story. You can read it at this link here
PWS Awareness on the radio!
A huge thank you to all the parents who are did radio interviews to help spread PWS Awareness during PWS Awareness Month May 2021. It is not an easy thing to share your personal story and even though we, as parents, are mastermind level experts in PWS and our own child, it can be difficult … Continue reading PWS Awareness on the radio!
PWS 5k! Are you ready!?
Have you a colourful start and finish line planned?? The PWS 5K team miss chalking and decorating the route! We can't wait to see your photos! Have you a team sign?? Don't forget to share with us, so we can cheer you on!! Go TEAM!!!!! Fancy Dress for the PWS 5K is ALWAYS encouraged!! If … Continue reading PWS 5k! Are you ready!?
The countdown is on.. just one week to go!
The countdown is on! Play-schools, schools and training centres are supporting PWS Go Orange Awareness Day and the PWS 5K! It all kicks off on Friday 28th May with Go Orange Day for PWS Awareness. This is a worldwide event that is growing bigger every year. The PWS 5K is taking place 28-30th May. You … Continue reading The countdown is on.. just one week to go!
It’s PWS Awareness month!! Here are ways you can get involved
Go orange for PWS Awareness on Friday 28th May! Get your friends and family to wear orange on Friday 28th May 2021 to spread awareness of PWS! Get your school to have a Go Orange day! Get everyone you know wearing orange! Please share your Go Orange photos with us for social media. You can … Continue reading It’s PWS Awareness month!! Here are ways you can get involved