SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Success In Singapore

On December 5th 2010, Chris and Erin Neesham ran the Singapore Half Marathon and successfully raised close to £3,000 for the Cystinosis Foundation UK. We are hugely grateful to them both for running through the grueling heat and raising such a marvelous amount. This will help us continue funding research now and in the future.

Erin takes up the story….

Singapore, December 2010

The 5th December 2010 dawned hot and dark, as it does pretty much every day in Singapore. As Chris and I gathered in the starting pen on the bridge leading over to Sentosa Island, thoughts of achieving an impressive time weren’t the only things troubling me. A beep from my phone indicated the arrival of a new text message: “Pull yourself together, you’ve got a marathon to run!” Aaah, words of wisdom from Edward’s mum…

Chris and I have been living in Singapore for nearly three years now. In order to combat the ‘Singapore Spread’ as it’s fondly known by all who enjoy beer and noodles, we decided to take up running. We actually found that we really enjoyed it. When the opportunity arose to enter the Singapore half marathon, we did so with enthusiasm…I just wasn’t quite so thrilled when I looked at the training schedule!

Living in Singapore is a wonderful experience but we do miss our family and friends in the UK, particularly when things don’t go according to plan. When we found out that my cousin Emily’s son, Edward, had been diagnosed with Cystinosis we were stunned. This was a condition that neither we, nor our families, had encountered before. Luckily the Cystinosis Foundation UK were able to offer a wealth of advice and support. We wanted to give something back and realised that turning our half marathon run into a sponsored event offered the perfect opportunity.

Setting up our JustGiving account through the link on the Cystinosis Foundation UK website couldn’t have been easier. We chatted to Emily and Rich, Edward’s parents, and between us came up with ‘Edward’s story’ for the front page of the website. From there, it was easy. Together we spread the word, through email, facebook, work colleagues and family members that we were raising money for Cystinosis Foundation UK. The response was unprecedented. Living and working in a different time zone to the majority of our contributors wasn’t an issue at all. Emily and Rich had editing rights to the Just Giving page too, so we all worked together to make it a success.

There was just one hurdle left to overcome…the half marathon itself. Well, what can I say? For all of the pain and discomfort that Edward suffers on a daily basis, the niggles caused by a 21.1km run paled into insignificance. Yes our feet hurt and yes we felt like giving up, but on 5th December, Edward’s second birthday, it was all worth it. We were pretty chuffed with our times, but the best bit was that we raised over £3,000 for Cystinosis Foundation UK in the hope of offering Edward and others like him a chance.

Erin and Chris after the finish
Erin and Chris Neesham

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