Prader Willi Syndrome Association Ireland (PWSAI)

Prader Willi Syndrome Association Ireland (PWSAI) Seeking a world where people with Prader-Willi Syndrome, their families, and their carers are supported in all aspects of care, education, and well-being.

Prader-Willi Syndrome Association of Ireland,
Carmichael Centre, 4, North Brunswick Street,
Dublin 7. D07 RHA8,

Reg. CHY number:15171
CRA Reg. 20051693
Company Registration: 364058

Website: www.pwsai.ie
Donate: https://www.idonate.ie/pwsai/642/donate

Hyperphagia doesn’t switch off.For someone with PWS, food is not simply about hunger or willpower.Food is everywhere. Wh...
17/08/2026

Hyperphagia doesn’t switch off.

For someone with PWS, food is not simply about hunger or willpower.

Food is everywhere. What feels ordinary to us can cause real stress and anxiety.

They can’t switch it off.
But we can switch on our understanding.

A simple… How can I help?

Ask. Listen. Understand. Support. www.pwsai.ie

🔔 Important! Have you booked your room for the PWSAI Family weekend? 🏨 🧡🎊Don’t delay- all info about the weekend can be...
14/08/2026

🔔 Important!

Have you booked your room for the PWSAI Family weekend? 🏨 🧡🎊

Don’t delay- all info about the weekend can be found on our website or email Emma [email protected]

A huge thank you to Team Lulu for organising a fantastic weekend for us all! We can’t wait to see everyone in Donegal

https://pwsai.ie/research-and-events/pwsai-family-weekend/

13/08/2026

IPWSO, Prader-Willi Syndrome Association USA and The Foundation for Prader-Willi Research have published a joint statement for families and health professionals about reported adverse events associated with VYKAT XR (diazoxide choline), which is currently approved by the US Food and Drug Administration (FDA) only.

We understand that hearing about possible side effects of a treatment can be worrying for families and caregivers. While these reports do not establish that VYKAT XR caused these outcomes, they highlight the importance of informed prescribing, appropriate patient selection and careful monitoring.

We hope these resources will help families, caregivers and healthcare professionals have informed conversations about VYKAT XR and support decisions based on the individual needs of each person.

The joint statement will be posted in the comments below. ⬇

Sometimes the oldest words are the ones that still say it best.Written over 40 years ago, A Prader-Willi Prayer is a hea...
07/08/2026

Sometimes the oldest words are the ones that still say it best.

Written over 40 years ago, A Prader-Willi Prayer is a heartfelt reminder of what people with PWS need most: understanding, respect, patience and love.

We hope it resonates with families, professionals and anyone wanting to better understand Prader-Willi syndrome.

Written by Norma Halverson.

Shared with gratitude by Prader-Willi Syndrome Association Ireland.

The SUAS social registration is open! 🎊For teens and adults with PWS (age 13 years and older.Must be accompanied by a pa...
06/08/2026

The SUAS social registration is open! 🎊

For teens and adults with PWS (age 13 years and older.Must be accompanied by a parent/carer )

Running alongside will be a workshop for parents. See our website for more info or email Emma at [email protected]

The activities will be released closer to the day. The SUAS subcommitee is finalising details.

It is with great sadness that we share the news that Lena, one of the founders of Prader-Willi Syndrome Association Irel...
29/07/2026

It is with great sadness that we share the news that Lena, one of the founders of Prader-Willi Syndrome Association Ireland (PWSAI), has passed away.

Forty years ago, Lena helped establish PWSAI from her sitting room, bringing together families who needed support, understanding and hope at a time when very little was available. Her vision, determination and compassion laid the foundations for the organisation we know today.

Over the past four decades, countless individuals with Prader-Willi syndrome and their families have benefited from the community she helped create. Her legacy lives on in every family supported, every friendship formed and every step forward made in improving the lives of people with PWS in Ireland.

As PWSAI marks its 40th anniversary this year, we do so with immense gratitude for Lena's vision, courage and unwavering commitment. The organisation she helped create has grown beyond what anyone could have imagined, and her legacy will continue to inspire and guide us for generations to come.

Our thoughts and deepest sympathies are with Lena's family, friends and all who had the privilege of knowing her.

Thank you, Lena, for everything you gave to our community. Your kindness, dedication and belief in a better future for people with PWS will never be forgotten.

Ar dheis Dé go raibh a hanam dílis.
May her gentle soul rest in peace.

https://rip.ie/death-notice/lena-lawlor-wicklow-kilmacanogue-637675

Participants with PWS needed for research-Travel expenses covered Location: CambridgeWho can take part?To be eligible, p...
17/07/2026

Participants with PWS needed for research-
Travel expenses covered

Location: Cambridge

Who can take part?
To be eligible, participants should:

Be 18–40 years of age.
Have no metal implants or metal in their body (as required for the study).

If you would like to learn more about the study or have any questions about what participation involves, please don’t hesitate to get in touch with the research team using the details provided in the study invitation.

More info:

https://pwsai.ie/2026/07/17/participate-in-pws-study-all-travel-costs-covered/

"Comparison is the thief of joy." 🧡Every person with Prader-Willi syndrome lives their own unique life.Different streng...
17/07/2026

"Comparison is the thief of joy." 🧡

Every person with Prader-Willi syndrome lives their own unique life.

Different strengths.
Different challenges.
Different milestones.

Let's stop measuring progress against others and start celebrating every step forward.. no matter how big or small.

Take it one day at a time 🧡 Keep routines where they help.🧡Build in exercise and movement in ways your person enjoys.🧡 U...
14/07/2026

Take it one day at a time

🧡 Keep routines where they help.
🧡Build in exercise and movement in ways your person enjoys.
🧡 Use your Flexibility Card when plans need to change.
🧡Remember that quieter days are just as valuable as busy ones.
🧡Celebrate the little wins, they all count.

Don't compare your summer to anyone else's.

Summer doesn't have to be picture perfect! 🖼️ Some days you'll head off on an adventure. 🏖️Some days you'll stay home be...
13/07/2026

Summer doesn't have to be picture perfect! 🖼️

Some days you'll head off on an adventure. 🏖️

Some days you'll stay home because routine feels happier and easier 🏡

Some sunny days you'll do very little at all (because everyone is melting! ☀️😅).

And that's ok.

Every person with PWS is different and every family has found routines and strategies that work for them. Trust what works in your home.

Take it one day at a time, make memories in your own way and enjoy the moments that matter. 🧡

Address

Carmichael Centre, 4 Brunswick Street North Arran Quay
Dublin

Telephone

+353872522832

Website

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