Merry Christmas 2007

2007 has been a remarkable year for the Cystinosis Foundation UK – put simply we achieved one of our most ambitious aims to date, when in February we succeeded in raising £100,000 for the funding of research projects. This has only been possible due to the efforts of individuals supporting the Foundation and we would like to thank everyone who has helped us to raise this fantastic amount. We have had everything from runners, cyclists, bikers, fashion shows, branded Cystinosis Foundation tea towel sales, raffles and generous donations from many individuals and organisations. And when you bear in mind that everyone, from the committee members to fundraisers to newsletter editors, gives up their time freely, often working around full-time jobs and family members with Cystinosis (or themselves suffering from Cystinosis), it makes the achievement all the more amazing.

So what happens with the money that is raised? Whilst there are drugs available to treat Cystinosis, the bottom line is that they are not profitable because there are not many Cystinosis sufferers, hence large pharmaceutical firms are not overly interested in committing their resources to improve and develop these drugs. So this is where we aim to make a difference. Presently, we are directly funding a research project at Sunderland University into improving the current medicines for Cystinosis, and this year we have also been able to purchase equipment for Professor Cairns’s team at Robert Gordons University to assist in their work to create a chemical camoflague that will improve the taste of Cystemine. As many of you know, this particular medicine has an unpleasant flavour, making it harder to administer. We understand both projects are progressing well and we hope to bring you more formal updates from the researchers themselves during 2008.

2007 was also to be the year of our bi-annual conference and tentative arrangements were made for the conference to be held in July in Manchester. However, insufficient numbers meant this did not go ahead. We hope that this is because families feel they have good support already and that the opportunity of the 2008 international conference in Dublin will be more alluring.

We hope to see you all at the conference in Dublin – it is a rare opportunity to meet face to face experts, other sufferers and their families in order to share both knowledge and companionship. The conference is being organised by the Irish Foundation (who also fund Professor Cairns’s project at Robert Gordons) and we will bring updates on the programme as they become available.

So what else will 2008 bring? Hopefully a step closer to reaching the £200,000 mark in our research funding target. The Foundation already has commitments from several individuals, including Wayne Bray, who has completed the first of 10 half marathons he intends to run between November 2007 and November 2008, and Ronnie Borland who is in training for the Edinburgh marathon on May 25th. We wish both runners the very best in their endeavours and look forward to bringing you updates on their progress! If you are interested in organising an event, or raising money for the Foundation, remember we have free fundraising packs to get you started. Please contact us for more informaton.

Over the year we will do our very best to keep you informed of events and our work.

But for now, from all at the Foundation, we would like to wish you a very Merry Christmas and a Happy New Year!

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