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335 %
£10,051
raised of £3,000 target
by 70 supporters
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Tom Stafford avatar
Tom Stafford

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Fundraising for Tuberous Sclerosis Association

335 %
£10,051
raised of £3,000 target
by 70 supporters
Donate
  • Event: Prudential Ride London 2017, 30 Jul 2017

Tuberous Sclerosis Association

We provide everyone affected by TSC to help for today & a cure for tomorrow

Charity Registration No. 1039549

Story

Thanks for taking the time to visit my JustGiving page. As you may be aware my daughter Polly was born with a rare genetic condition called Tuberous Sclerosis. In a nutshell, this means she has benign tumours in her brain, kidney and heart (currently). This is a lifelong condition for her and there is no cure so essentially this means all you can do is manage the various issues these tumours cause as best you can. Unfortunately Polly was recently diagnosed with a new kind of brain tumour which is growing and inoperable so she's had to start a new treatment with lots of unpleasant side effects in the hope that this halts or shrinks the tumour. This has spurred me into action on 2017's fundraising. I've therefore signed up for Ride London which is a 100 mile race out of London into Surrey and back again via lots of murderous hills to raise money for the Tuberous Sclerosis Association. The work they do is absolutely crucial to families affected by TS because the rarity of the condition means access to services and expertise is severely limited. They are also the only people funding research and driving forward the campaign for access to it on the NHS. Without this work Polly's new medicine wouldn't have been available and I'm not entirely sure (and don't want to think about) where we would now be after the discovery of her new brain tumour without it. Thanks!

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