Community support

Funding level: £5,001 to £10,000

Description

Prader-Willi syndrome (PWS) is a rare, complex genetic disorder that affects both males and females from birth and throughout their lives.

It causes:

• Low muscle tone with consequent motor developmental delays
• A mild to moderate learning difficulty
• Incomplete sexual development
• Emotional and social immaturity, leading to temper tantrums
• An overwhelming and insatiable chronic appetite usually develops during childhood which, without rigorous food management and exercise regimes, leads to food seeking, stealing and life threatening obesity

PWS occurs randomly in about 1:20,000 births and it is estimated that there are about 2,000 people living with PWS in the UK.

Our Familynet project operates across the whole U.K. but split into 12 regions. Some regions are now well developed with volunteers recruited and training and others areas are in process. At a recent volunteers training session it was highlighted that it would be very beneficial if each area had a kit bag of resources to use at events. Each area runs a range of events including coffee mornings, family days, Christamas parties, outings etc.

These events are very important to our PWS community. The events give families the chance to meet up regularly and discuss issues and support each other in a safe and controlled environment. Those with PWS can meet others with the same issues and share experiences whilst having fun, often forming life-long friendships. Parents and carers need time to talk to others and peer to peer support is very important. Siblings also need time to build relationships with others who understand what they are going through as a family.

These events also help to raise awareness in local communities. Often people have not heard of this rare and incurable syndrome. A better understanding of it enables people to support the PWS families. For example our PWS people will food seek and steal to feed their insatiable appetite and if locals are aware of this strategies can be put in place to curb this behavior.

Currently if a region is wanting to hold an event we have to send things like flags, banners, balloons and bunting form the office. This involves costs and time and as our reach is growing we do not have enough kit to share around which means people have to beg, borrow and hire equipment.

It is important for us teach our PWS people new skills such as sharing and taking turns which are life skills. Those with PWS have low muscle tone so we also want to promote activity which will also help with the obesity. These skills may aid employment.

If we were to be successful we would offer the regional groups the opportunity to put forward what they would like in their kit bags. However at a recent training day volunteers gave us examples of what that might include: banner, signage, large games, arts and crafts, idiots guide to activities, books, sports equipment, waterproof sheeting and something to carry and store equipment it. They would also like some sort of uniform so that they are easily recognizable especially for new families attending.

Each event differs in numbers but on average 8 people with PWS and 3 other families members attend. Each region aims for 4 events a year and we have 12 regions. So a minimum of 1,500 people will benefit from the funding.

Why vote for us? Our families are dealing with a life-long syndrome which can be life-threatening without constant support and supervision from families/ carers. Imagine not being able to celebrate birthdays, visits and Christmas with cakes, chocolate and sweets as they are too calorific. PWS people have only two thirds of the calories we have but they are constantly starving hungry. We need your help please

You would be providing those with PWS the chance to feel part of some something rather than apart. The project is sustainable because it is run by our families in their local area meeting their local needs.

Prader-Willi Syndrome Association UK

The project is supported by a part-time staff member but parents, carers and family members volunteer and run events. Those with PWS love our family meets and an example of the benefit is when a young PWS man moved home he know others as they had met at Familynet. Siblings get opportunity for fun.

Location: Derby