SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Merry Christmas, Thank You and Best Wishes for 2006

Santa WinkingChristmas time and the end of the year is always a time for reflection. And as we think about the Cystinosis Foundation’s achievements during this year, we’d like to take this opportunity to say thank you to all those who have helped us during 2005.

The Cystinosis Foundation is a small charity and relies heavily on a small number of individuals to raise funds, promote awareness, communicate with members and perform the daily administration tasks that keep the Foundation alive.

2005 has seen us make great strides towards reaching our £100,000 research target. Our total now stands around £70,000! So much has been raised, but there is still much to be done. Once the £100,000 target has been reached, we can begin the funding of new research projects. We cannot start these projects until we can guarantee we have the money to fund them to completion.

However, we have been able to provide funding for new equipment for research projects at Robert Gordon’s University in Aberdeen. A new vacuum oven was purchased to help Dr Don Cairn’s team in their current research to improve cysteamine – the medicine many Cystinotics must take. Dr Roz Anderson and her team have also continued their research at Sunderland University and we wish them and the Robert Gordon’s team all very the best for 2006.

Buchan Motorcycle Club present cheque for £420We also welcome a new member to the committee – Roy Forsyth of Mintlaw (north of Aberdeen) joined in September to help Jonathan, John, Gareth and Paul in the running of the Foundation. Roy’s daughter, Lena, was diagnosed with Cystinosis 4 years ago and both Roy and his wife, Vicky, have been active in raising funds for the Foundation.

You may also have noticed that the website has been re-designed this year! It is our intention that this development shall continue in order to keep you up-to-date with the activities and needs of the Foundation. We have had many enquiries for information, offers of help and feedback. This contact guides us in doing the right thing and doing it effectively. Feedback, the negative and the positive, are always appreciated.

My personal hope is that in 2006 more people will become involved with the Foundation and help us progress. All help is appreciated and gratefully received. Selling just a handful of wristbands (no pun intended) takes us closer to our aims.

2006 also sees the 4th International Cystinosis Conference in Amsterdam (June 30th – July 2nd) and with continued effort from our supporters we may even reach the target for our £100,000 appeal!

Again, thank you to all those who have helped in 2005. We hope you will continue to support us in 2006 and wish you a Merry Christmas and a Happy New Year.


    Warmest Regards,

    Matt (‘web person’ on behalf of the Cystinosis Foundation UK).

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