Who we are.
We are the Prader-Willi Syndrome (PWS) Association UK and we will widen participation for adults with PWS by providing a conference with workshops so that more people can benefit. We are the only charity in the UK specifically supporting those with PWS.
What we are doing.
We currently have an OWL (Our Way of Life) Focus group made up of adults with Prader-Willi syndrome (PWS). They feed in to the trustee board to ensure we are providing services that they need. These workshops will be supported by the Healthy Futures pack, which covers subjects like Mental Health and wellbeing, exercise and diet. (This project was supported by Aviva last year and we want to expand it as it has been so well received). These workshops will be attended by around 50 adults with PWS and their carers making 100 adults in total. They would discuss issues affecting them and what services could be provided or accessed to support them.
How the money will be spent.
Our staff and trustees would deliver some of the sessions but we would also recruit specialist providers for some pieces of work. The OWL Focus group have a list of subjects that they would like to be debated. The group feel it is very important to share experiences and improve their communications, which in turn will reduce their social isolation. They also want to have some new experiences to challenge their learning disability stereo-type: improve their self-esteem and give them more confidence.
Why is this important.
A group member told us "Sharing experiences is very important and communication has helped reduce our social isolation" we want to bring this experience to as many people as possible.