Annual Review

SantaQuite simply, what a year! The Cystinosis Foundation UK has been going for over ten years now, but this year has been a particularly successful one, full of activities.

In April, we had one of the biggest events ever in support of the Foundation – under the direction of organiser, Mark Hewitt, 60 individuals walked 11 miles around Sheffield raising £10,000 in the process. We are very grateful to Mark for all his work to organise the walk, and to the Ingham family who inspired Mark. Rumours of Sheffield 2012 are growing!

Cystinosis Foundation UK Sky DiveThe energetic events continued over the year. Chris and Erin Neesham ran the Singapore Half Marathon. Martin Kemp ran the London Marathon in May. The Berlin Wallies raised £7,000 running the Berlin Marathon. Ethne Wright swam 200 lengths of her local pool in support of her grandaughter Darcy Benford, who has cystinosis. And Di Larkin raised £3,000 skydiving with her daughter Nicola.

There have been many other events over the year, from golf days to chest waxes. We are grateful to each and every person for their efforts. We’ve even had a little fundraising help from Scotland’s First Minister, Alex Salmond who donated a bottle of whisky to a raffle. A special mention must also go to Nikki Woods, who has continuously being selling greetings cards on eBay over the year.

All this work helps us to continue to fund research, primarily at The Robert Gordon University in Aberdeen and Sunderland University. Sunderland University also opened a new science complex earlier this year that will assist all the research projects undertaken there, whilst the Foundation were given a special mention in their promotional video. Ultimately, all the research undertaken is to help every person with cystinosis and their families, including individuals such as Morven Hutchison and Sarah Laing, who have shared their stories and, in the case of Sarah, appeared on television.

As well as research, the Foundation tries to play a role in assisting those touched by cystinosis and providing education. Hence, we are advocates of the Cure Cystinosis International Registry and encourage EVERYONE to register. These registries play a vital part in helping progress research, as has been proven in other conditions.

In addition, we currently have a small supply of board games and books about Cystinosis that we can send to families for the price of the postage, on a first come, first served basis.

During September, the Foundation also held a UK Conference in Manchester. This marked a major milestone for the Foundation as it reflects the growing interest in our charity and the strength of the UK cystinosis community. We had the honour of including many researchers and medical experts from both the UK and further afield. A big thank you to all those who attended and we hope you found it a beneficial and rewarding experience.

Personally, I’ve been involved with the Foundation now for seven years and I really feel this has been our biggest year – our biggest event, the conference and more and more people becoming involved. My particular thanks go to Alex Hutchinson who is starting to help out with the website. Through the continued effort of all our supporters, researchers and medical experts, we are slowly, but surely, making positive progress!

Merry Christmas and best wishes for 2012!


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