What is PWS?

Prader Willi Syndrome is a rare genetic disorder that affects just over 100 people in Ireland. It is diagnosed in infants and occurs at, or near the time of conception when a spontaneous genetic error occurs for unknown reasons.

It causes low muscle tone, cognitive disabilities, problem behaviors, a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity amongst other features. In Ireland, PWS affects just over 100 individuals.

People with PWS must be put on a strict calorie controlled diet and cannot be left unsupervised in areas where there is food available. Living with PWS involves a lifetime of challenges, physiotherapy, occupational therapy, speech and language therapy, dietician and medical visits. For more information see the following article published in the Irish Times in 2017.

The Prader Willi Syndrome Association of Ireland (PWSAI) does tremendous work by offering much needed support to families with children and adults with PWS and hosting annual PWS Family Weekends. Shockingly, PWSAI receive NO Government Funding, it is completely voluntary run. So take our challenge and enter the PWS 5km to raise much needed funds and awareness for this super charity!

Register online for PWS 5km

Emma Iphone May 2013 257IMG_1506

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