Prader Willi Syndrome Association Ireland. Supporting people with PWS, families & carers: care, education, well-being. Reg Charity number 15171
Ireland
Joined July 2012
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Listen to PWSAI Chairperson Rory Tierney on @NewstalkFM, alongside Lynsey from @Resilience_ie - thank you for raising awareness of PWS and for celebrating the opening of Áit Shona! #praderwillisyndrome
newstalk.com/podcasts/highli…
This is a world’s FIRST! The first #praderwillisyndrome respite service in the world 🌍 🧡🏡🎊
Thank you to Minister @AnneRabbitte TD for her continued support and for officially opening Ait Shona
#praderwillisyndrome #respite
It was a day for celebration and we are grateful to the incredible team in @Resilience_ie for creating an incredible holiday house for our people with PWS to spend some time in, the @HSELive for their collaboration and understanding of the need of a PWS specific service
The 7th September 2024 will be one for the PWSAI history book. We are delighted to announce that Ait Shona, the first dedicated PWS respite house in the world is open!!
🎊🧡
#praderwillisyndrome
Prader-Willi Ireland retweeted
Prader-Willi syndrome impacts around 120 people in Ireland.
newstalk.com/news/worlds-fir…
Prader-Willi Ireland retweeted
Our CEO John Dolan is pictured with Rory Tierney, Emma Walsh Tierney and their son Henry Tierney and Gary Brennan of @PWSAI at yesterday’s launch by @rodericogorman of a significant Joint National Report by PWSAI and @HSELive See pwsai.ie #PraderWilliSyndrome
ALT Our CEO John Dolan is pictured with Rory Tierney, Emma Walsh Tierney and their son Henry Tierney and Gary Brennan of @PWSAI at yesterday’s launch by @rodericogorman of a significant Joint National Report by PWSAI and @HSELive in Dublin. Group are standing in a row at a PWSAI banner.
Prader-Willi Ireland retweeted
Really honoured to be invited to be invited to launch @PWSAI report today which, centres the voices & perspectives of those directly impacted by PWS to offer an understanding of the lived experience of those affected and sets out realistic ways that services can improve.
Fantastic news for our PWS families- the respite service will open this summer 🧡
#PraderWilliSyndrome
#PWSNationalReportLaunch
#HSEIreland
#PWSAI
#PWSAdvocacy
#WholeOfLifeSupport
Prader-Willi Ireland retweeted
Thank you @PWSAI for inviting us to the launch of the Joint National Report with @HSELive by @rodericogorman Congratulations @PWSAI on this significant milestone in supporting people with PWS and their families
@DCU_IoE @NABMSE @InclusionIre @DCU
A momentous day in our history for PWSAI bringing this report to fruition. Looking forward to working with the HsE on implementing all recommendations in the report
#PraderWilliSyndrome
#PWSNationalReportLaunch
#HSEIreland
#PWSAI
#PWSAdvocacy
#WholeOfLifeSupport
Bernard O’Regan - “we will be establishing an implementation committee and a monitoring group to get the recommendations acted upon from this report”
#PraderWilliSyndrome
#PWSNationalReportLaunch
#HSEIreland
#PWSAI
#PWSAdvocacy
#WholeOfLifeSupport
Rory Tierney speaks of the power this report will give families in advocating for our children’s futures
#PraderWilliSyndrome
#PWSNationalReportLaunch
#HSEIreland @HSELive
#PWSAI
#PWSAdvocacy
#WholeOfLifeSupport
Chairperson Rory Tierney is speaking of the importance of implementing the recommendations into todays report
#PraderWilliSyndrome
#PWSNationalReportLaunch
#HSEIreland @HSELive
#PWSAI
#PWSAdvocacy
#WholeOfLifeSupport
This report needs to make a difference to all my friends with PWS - Richard
#PraderWilliSyndrome
#PWSNationalReportLaunch
#HSEIreland @HSELive
#PWSAI
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#WholeOfLifeSupport
Now hearing from an adult with PWS, Richard speaking of his experiences, a member of our SUAS advocacy group
#PraderWilliSyndrome
#PWSNationalReportLaunch
@HSELive
#PWSAI
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“PWS is real and people who have PWS are deserving of supports orientated to their specific needs”
This is what the report says- Marguerite parent of an adult with PWS
#PraderWilliSyndrome
#PWSNationalReportLaunch
@HSELive
#PWSAI
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National Development Manager Gary Brennan has invited Marguerite, parent to an adult with PWS to share her experiences living with PWS
#PraderWilliSyndrome
#PWSNationalReportLaunch
@HSELive
#PWSAI
#PWSAdvocacy
#WholeOfLifeSupport