16 May 2022
The Prader Willi awareness month of events will culminate on May 27th with a 5km walk/swim/run fundraiser. Given the nature of Prader Willi Syndrome, it is so important to recognise the achievements of attempting and potentially completing such a physical task of a 5km exercise.
Prader-Willi syndrome (PWS) is a genetic multisystem disorder characterized during infancy by fatigue, diminished muscle tone (hypotonia), a weak suck and feeding difficulties with poor weight gain and growth and other hormone deficiency.
PWS occurs when the genes in a specific region of chromosome 15 are not present or do not function. This region of chromosome 15 is located at 15q11.2-q13 and has been designated the Prader-Will syndrome/Angelman syndrome region (PWS/AS). In individuals with PWS, the nonfunctioning PWS/AS region is always located on the number 15 chromosome inherited from the father.
If people can’t take part, the organisation suggest asking them to donate. They advise that you can do your run or walk at a time that suits you anytime through the weekend! You can visit the donation page here.
The PWSAI offer supports for those with the condition both young and old, and for families of those with the condition. Information supports are provided, as well as hosting fundraising events, annual conferences and so much more.
Indeed, PWSAI will host the International Prader-Willi Syndrome Organisation conference in the University of Limerick from July 6th to 10th 2022. There will be contributions from scientific, clinical, and care provider professionals from around the globe.
There will be an opportunity for parents and people with PWS to meet and interact with these professionals as well as parents and people with PWS from around the world. For the most up to date information, please visit this page which will bring you to the IPWSO Conference 2022 page.
The Prader Willi Syndrome Association of Ireland are the national voluntary organisation for those affected by Prader Willi Syndrome. Based in the Carmichael Centre, Dublin 1, they are a resident member organisation here at Carmichael. If you wish to find out more about the PWSAI visit their website here.