We want to help everyone with Prader-Willi Syndrome learn how to manage their PWS and help them towards a healthy future.
PWSA UK is the only charity working with the Prader-Willi Syndrome (PWS) community and we have been supporting everyone affected by this rare genetic syndrome since 1982.
What is Prader-Willi Syndrome
Prader-Willi Syndrome is a rare, complex genetic disorder that affects people from birth and throughout their lives. It causes low muscle tone with consequent motor development delays, moderate learning difficulties, incomplete sexual development, emotional and social immaturity, leading to challenging behaviour. During childhood, an overwhelming, insatiable, relentless appetite develops which, without rigorous food management and exercise regimes, leads to food seeking, stealing and life threatening obesity. There is no cure.
People with PWS feel starving hungry all the time but only need 60% of the calories of everyone else. That is the reality of everyday life for people living with Prader-Willi Syndrome.
The Healthy Futures Project
The Healthy Futures Project is to help people with Prader-Willi Syndrome to learn about their syndrome and the strict regime that they must follow to improve their physical and mental health.
We will be producing an easy read, engaging resource to help people understand the complexities of their syndrome, how to manage their hunger, their mood swings and how to live within an environment where we are surrounded by food.
We are looking for crowdfunding to launch this resource to our PWS community at a series of events around the country. We need to encourage them to join this programme and motivate them to follow a strict healthy regime to manage this syndrome and avoid morbid obesity.
We want to organise 4 Walkover PWS events throughout the UK where they will all take part in a 4k walk. This walk was developed by our Focus Group of young people with PWS and our pilot in May attracted 122 people; 58 of them young people with PWS across all age groups. The achievement felt by someone with PWS completing 4k is immense and our walkers were all saying ‘It was great’ ‘Can we do it again’ ‘I beat my brother – that’s a first!’
The WalkOver PWS will be a springboard for the Healthy Futures resource which provides the tools needed to introduce healthy behaviours into their routine. It will be the encouragement to join the programme and the motivator to follow the strict healthy regime so critical to those with PWS.