Heres a little bit of info for the charity we are raising much needed funds for this year....
Prader Willi Reasearch Australia
A little bit of context
PWS is a complex condition caused by an anomoly on chromosome 15 and attacks the body's ability to regulate itself. People with PWS are typically very loving and affectionate and work very hard to do simple things like walking and riding a bike. They live with physical and intellectual disability, challenging behaviours and poor emotional regulation and numerous medical conditions, including a relentless hunger. They long for a typical life - to live independently, a partner, a job, a family and to STOP feeling hungry.
Modern genetic research offers more hope of a treatment than ever before. Critical, when there is only 1 treatment available for some PWS symptoms at the moment.
But there’s a problem
Research is critically underfunded. We've identified about $300,000 of Australian money going into research related to PWS annually. That's nothing. Yet around 1500 families are affected - and their wellbeing is worse than for any other developmental disability (Uni Sydney 20 year study).