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Charity supporting people with rare genetic disease given boost by Shropshire IT firm
17 Feb 2016
by Rhea Alton

A charity which supports families affected by the same genetic disease which claimed the life of late fundraiser Stephen Sutton has received a welcome boost thanks to a Shropshire-based IT firm.
Staff at Network Support Solutions (NSS) based at Shrewsbury Business Park began collecting their loose change 12 months ago in support of Lynch Syndrome UK (LSUK).
Lynch Syndrome is an inherited condition which increases the risk of developing colon cancer and other associated cancers.
Katy Jones and Paul Coulthard-Jones, joint managing directors of NSS, became aware of the disorder several years ago when close friend and former colleague Simon Reynolds was diagnosed with the condition.
Mr Reynolds, from Newport, first discovered he had colon cancer 14 years ago when he was just 34-years-old.
He underwent an operation to remove the tumour and with the help of radiotherapy treatment made a full recovery.
However, several years later he went on to suffer other kinds of cancer and underwent further operations to remove his prostate, bladder and tumours from his pelvic area.
In 2014 his condition was deemed terminal by doctors and his health deteriorated significantly in June 2015. In January, just two days before his 48th birthday, he sadly died.
His death has left a huge hole in his family’s life but wife, Lisa, and sister Helen Bufton, who has also been diagnosed with Lynch Syndrome, are now more determined than ever to raise awareness of the condition through the charity.
This week they visited staff at NSS to receive the £200 donation from the team.
Ms Jones said: “We have been collecting loose change for about 12 months and whenever anyone has asked us to make a donation or sponsor them for an event we have instead put the money in our pot.
“Simon was such a good friend to both myself and Paul. We will miss him a great deal. This donation from the company is the least we can do to support his family and others who have the condition and we hope it will go some way to raising greater awareness.
Mrs Reynolds said: “Simon was a brave, selfless, caring and loving husband and father to his four children.
“He never once made a fuss and took everything in his stride.
“He was knocked back so many times but just picked himself back up and got on with things.
“He spent more time caring and worrying about everyone else than he did himself.
“We are so grateful to all the staff at Network Support Solutions for this wonderful donation.
“First and foremost Katy and Paul were great friends to Simon and myself but this money will give us the opportunity to raise greater awareness of Lynch Syndrome which is tremendous.
“Simon was only diagnosed with Lynch Syndrome in 2012 by which time the cancer had really taken a hold of his body. Had he known sooner, things could have been different.”
Mrs Bufton, from Trench, whose mother Linda Reynolds, daughter Chantelle and sister Jennie Gibson also has Lynch Syndrome, added: “It’s this awareness we are seeking to improve through the charity.
“Our aim is to spread awareness of the condition among GP’s, medical professionals and the general public.
“Experts believe around 1 in 350 people in the UK are unaware they have it and it’s our mission to make them aware and save lives.
“We want everyone under 70 to be screened for the genetic disorder after all screening will save lives.
“In my eyes Simon gave up his life for us. Without his diagnosis we wouldn’t have known our family have Lynch Syndrome. My son will be screened in a couple of years time when he is older and there is a 50:50 chance he will have it.”
All funds donated and raised by the charity are used to produce information leaflets on the condition, about different cancers and to promote patient days in regional genetic clinics.
If you have a family history of related cancers, particularly colon or womb, or have a family member diagnosed with cancer at a younger age, then you may have a genetic condition such as Lynch Syndrome.
On May 7 this year the charity, of which Mrs Bufton is a trustee, will host a conference in Bristol.
For more information on the charity visit the website www.lynch-syndrome-uk.org.