Prader Willi Syndrome

This year is New Directions 10^th anniversary and there have been various events to raise money for the PWSA (Prader Willi Syndrome Association) and to raise awareness of the syndrome. This years fundraising events have been hugely successful, they included things like, staff jumping out of planes. One of our staff has done various runs and has reached her target of raising £1000. Our service users have run car washes which were very successful, and there was a picnic in the park which had events like throwing sponges at staff and games in the park.  The most recent event was held in a caravan park just down the road from one of the homes.

Last weekend was New Directions 10^th actual Anniversary, and our development manager had organised for roughly 18 of their Service Users to stay at a caravan park just down the road along with some of their parents and as many staff as required. There were various events going on, including a play Written by Hilary Mackelden (one of the service users parents). This play was called ‘Sammy’ and it was all about PWS and family life.

During the course of last week heading up to the weekend, everything started to go wrong. The actors dropped out of doing the play and phone numbers were lost. Fortunately all of this was solved and the weekend approached. Everyone arrived all right and the weekend began. Everybody had a fantastic time and the play was a blast! Saturday night everyone enjoyed the evening entertainment and danced the night away. All of the service users and their parents that came to stay said it was a huge success and said that they would love to do it again.

Our last awareness and Fundraising initiative of our 10^th anniversary is this Sunday 28^th September 2008. A “walk for Vincent”.  Vincent Palmer was New Directions development manager’s nephew, he had Prader Willi Syndrome. He met an early demise, like Chris Leppard, from Hastings, at the age of 20 weighing in excess of 26 stone in January 1997. It was his death that led to the opening of specific accommodation for adults with Prader Willi Syndrome. This walk is in memory of Vincent and for all of his family and˚ friends who miss him dearly.

For more information on New Directions residence go to www.newdirections.gb.com

Bishops Way, a new specialist service for adults with Prader-Willi Syndrome opened today (1st Sep 08), when Sally from Somerset became the first Service User.