London Marathon 2018 - introducing our #TeamTSA runners

This year we have five amazing people running for us in the Virgin London Marathon 2018 and they are as follows:

 

Jamie Wareing - Jamie from Preston, works for Preston City Council, and is running for #TeamTSA because his daughter Elsie, 2, has TSC. 

“Elsie’s spasms are currently under control and she’ll hopefully grow out of them. Unlike many people with this condition Elsie has developed perfectly, meeting all targets and basically developing like any other child would without this condition. She has a few skin problems because of the condition but nothing serious or too noticeable at the minute. She’s a happy little girl, attends nursery three days a week and has a huge loving family.

“I’m fundraising for TSA because unlike Elsie there’s many children that aren’t so lucky and have many problems – Elsie may have in the future but we are staying positive and have a great team of specialists that look after her. ”

You can sponsor Jamie here: https://www.justgiving.com/fundraising/jamie-wareing
 


 

 

Richard Vennard - Richard, from Cwmbran, in South Wales, works for Dwr Cymru / Welsh Water and is running for #TeamTSA alongside his son-in-law Jamie Wareing because his granddaughter Elsie has TSC.  

"I have a granddaughter, Elsie, aged 2, who was diagnosed with Tuberous Sclerosis 12 months ago, following a period of unidentified fits," says Richard. "We have been seeking information to understand the condition, what the prognosis is, and what this means for her future. Research and awareness does not appear to be extensive and we are keen to try and contribute to changing that. My daughter & husband will need support going forward, possibly from outside the family, so fundraising for the charity will enable opportunities for support and sharing the pressures associated with the condition." 

You can sponsor Richard here: https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=RichardVennard&pageUrl=1
 


 

 

Huw Knight - Huw, from Barnstaple in Devon, is running for #TeamTSA because he has been involved in research into treatment for TSC for many years.

"Until very recently, I worked as part of the Rare Disease team at Novartis," says Huw. "I was involved in TSC, and it opened my eyes to the plight that patients with TSC suffer. I was part of the team that helped to campaign for access to Everolimus in both SEGA and AML indications, and have worked closely on a number of projects with Prof Sampson, Dr Amin and Dr Charles Shepherd. In addition, I am aware of a person with TSC in my village!"

You can sponsor Huw here: https://www.justgiving.com/fundraising/huw-knight1
 


 

 

Kris Stafferton - Kris, from Essex, is a store manager for Greggs and is running for #TeamTSA because his daughter Faith, aged 5, has TSC. 

"We'd never ever heard of TSC until we were confronted with it," says Kris. "Faith doesn't show many signs of it at all. So I'm doing the marathon as a way of trying to pay off the good karma with her. The TSA is something that's very near and dear to us."

You can sponsor Kris here: https://www.justgiving.com/fundraising/kris-stafferton2
 


 

 

Graham Sale - Graham, from London, is a pilot with British Airways and this will be the second year running that he is part of #TeamTSA running the London Marathon for us. He is motivated to run because his wife, Adrianne, and mum to the couple's three children, has TSC.

"Adrianne is the rock of our family and is able to continue to be thanks to the wonderful care she receives from the various specialists involved in this condition that monitor her through the year and have worked tirelessly to get medications approved,' says Graham. 'The TSA needs both money and awareness in order to continue its work to improve the treatments available for people who carry this genetic condition. Anything you can donate is greatly appreciated and allows the TSA to help those with this condition and their families."

You can sponsor Graham here: https://www.justgiving.com/fundraising/graham-sale