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Parkinson’s -WSS (Tough Mudder)

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10 old and not very fit lads are going to run Tough Mudder 2018 which is a 13 mile assault course for two great causes, Parkinson’s UK and Wiedemann-Steiner Syndrome.  We have chosen these as they are both very close to our heart and effect members of the group.

Parkinson’s Disease is a long term degenerative disorder of the central nervous system that mainly affects the motor system.  The symptoms generally come on slowly over time.  Early in the disease, the most obvious are shaking, rigidity, slowness of movement and difficulty with walking.

Paul Edwards one of the members of our group who is running Tough Mudder has recently been diagnosed with this condition.  We will all be running with Paul to raise money for Parkinson’s UK,  whose aim is to assist people with the disease and to help find a cure.

Wiedemann-Steiner Syndrome is a very rare genetic disorder that currently effects approx 300 people worldwide and approx 25 people within the UK.  

People affected by WSS have a range of features with varying severity.  These include, feeding and digestion problems, seizures, heart abnormalities,  developmental delay, reduction in muscle tone (hypotonia), distinctive facial features, intellectual disability, short stature, ADHD, behavioural issues and many other other symptoms.  

Scott’s son was born with WSS and has spent a lot of time in hospital having many procedures and operations due to his condition.  He was a very poorly baby who struggled to meet all his milestones and required a feeding tube due failure to thrive and pneumonia. He still continues to struggle with everyday issues that affect his fine and gross motor skills, sensory issues, development/educational needs and other long-term health problems.

We hope to raise money for a charity that we are setting up to help other children within the UK that suffer from this condition.  

The money will be used to raise awareness, support families whose children are affected and to supply them with equipment or additional support.  

Please help us and raise as much as possible to help find cures and assist people affected with Parkinson’s and WSS.

Thanks

Scott, Paul, Colin, Mike F, Andy H, Lee, Andy W, Christian, Mike J and Joe.

Organizer

Scott Clarke
Organizer

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