Andrew Cunis
Pedal for PWS - Tom Cunis
Fundraising for Prader-Willi Syndrome Association Uk
Story
On the 4th August 2010 eight friends will be cycling from London to Cornwall (over 300 miles in 3 days) to raise money for the Prader Willi Syndrome Association (PWS)
Pedalling for PWS was thought up after our son, Tom Cunis, was born with this very rare and complex genetic disorder, Prader Willi Syndrome. When Tom was diagnosed it was a condition that we knew nothing about, however it was the Association that was able to provide immediate support and comfort, and more importantly stressed that we were not alone. The charity provides all the necessary support to those families directly affected by PWS as well as helping with the essential research to understand more about the condition and possible remedies.
Whilst the first 4 months of Tom’s life have been a joy for us, it certainly hasn’t been without it stresses and strains; particularly in the early stages when we were advised something was wrong but weren’t given the immediate answers. Having this diagnosis has changed our outlook and we now want to do all we can to help families like ourselves, as well as raise money to fund the continued research into this complex disorder. Due to the rareness of the condition (affecting circa 1:22,000) the PWS Association is a very small charity relying entirely on volunteers raising money; and this is why we are taking on this charity bike ride.
PWS currently has no cure and therefore for those directly affected their lives can take on difficult additional challenges. Currently there is research taking place in several areas that may help manage the condition to improve the quality of life for PWS sufferers. This is an area that is clearly important to us and anything that will help Tom and other PWS sufferers is at the heart of why we are all doing this.
To see more information about our route, the team and PWS please visit www.pedalforpws.co.uk
The Pedal for PWS Team consists of the following individuals:
The Cyclists:
Andrew Cunis
Oliver Holbourn
James Sayer
Nick Moore
Steve Moore
Tim Averill
Guy Phillips
James Smither
The Support Team:
Beccy Cunis (Support car)
Clare Luther and her two daughters Emily and Rosie (joining the support car on day 2 and 3)
Lene Cunis (Team Physio on the 2nd evening and 3rd day!!)
It would mean a lot to us and the team if you are able to support us and help make a difference to those individuals whose lives are directly affected by PWS.
Love
Andy, Lene, Oliver, Tom Cunis and the Pedal for PWS Team