Health and wellbeing

Funding level: £5,001 to £10,000


Prader-Willi syndrome (PWS) is a rare, complex genetic disorder that affects people from birth and throughout their lives. It causes low muscle tone and motor developmental delays, moderate learning difficulties, incomplete sexual development, emotional and social immaturity, leading to challenging behaviour. During childhood, an overwhelming, insatiable, chronic appetite develops which, without rigorous food management and exercise regimes, leads to food seeking, stealing and life threatening obesity.

This project is to help people with PWS understand their syndrome and the regime that they must follow to improve their physical and mental health. We want to teach children and adults the fundamentals of living with PWS as a conduit for them to take some responsibility for their own physical and mental health.

We will produce an easy read programme for people with PWS explaining their PWS and the food management and food security they will need to maintain their health. It will also explore their mood swings and how to manage them, daily exercise needs and tips to manage daily life.

We will launch this to our community at a series of WalkOver PWS walks throughout the UK, bringing our PWS community together to maximise motivation and boost their social interaction.

How many people will benefit?
There are 2000 people living with PWS and all can benefit from this programme, which will be made freely available to all. Most will have siblings, parents, grandparents, friends who will all benefit from people with PWS understanding and ‘buying into’ this healthy regime.

Longevity and sustainability.
There is nothing available for people with PWS to teach them about their syndrome and the regime they need to follow. All current information is for parents, carers and professionals.

This project will be the foundation of all future programmes for people with PWS. It will kick start a lifelong move for our community toward people with PWS taking some responsibility for their own physical and mental well-being and fulfilling their potential.

The programme will be sustained with regular updates by PWSA UK staff as management techniques develop, and released to our community through the annual WalkOver PWS Walks.

The annual walks allow us to introduce the programme to new people, maintain motivation of existing participants and continue social interaction. Taking exercise is especially important to those with PWS as they have low muscle tone and only require 60% of the calories of others.

Volunteers are critical to the success of the Walkover walks. In our pilot they manned markers, provided support for walkers and produced healthy foods. Each walk will become an annual event, led by trained volunteers, supported by PWSA UK.

The funding will enable us to develop the programme and establish resources, venues, refreshments, T-shirts, medals, certificates etc. We will not require additional funding.

Likelihood of success.
We held our first pilot 4K Walkover PWS this year and 122 attended; 58 of all ages had PWS. Everyone completed the walk which was a great achievement. They interacted with family, friends and the community talking and sharing experiences whilst improving their health and wellbeing. Those with PWS made new friends, some meeting others with PWS for the first time. Links from this event between families and those with PWS become lifelong as social media enables connections to continue despite the distances apart. Siblings, who often feel left out, were able to have fun with others who understood and continue to learn about living with this difficult syndrome.

PWS walkers told us “it was great can I go round again?”, “are we coming again next year?”, “I beat my brother, that’s a first”. Our OWL Focus group (our way of life) said they would like something specifically for them and so the idea was developed with them to ensure it met their needs.

PWSA UK (Prader-Willi Syndrome Association)

Moment of Pride

Our project comes directly from those with PWS through feedback and the Focus group. Our PWS community face a daily battle with their issues but they really want to do this project. They want to raise awareness, meet others and improve their mental and physical health. They said “we CAN do it”.

Location: Great Britain, United Kingdom


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