Merry Christmas – Review Of the Year

Santa WinkingAnd before we know it, it is Christmas time again already! It’s been a successful year for the Foundation and now is a good time to look back and reflect on some of the highlights.

In 2005 we reached the £70,000 mark for our £100,000 research target and now at the end of 2006 we are only £15,000 short of the required total. We have raised less in 2006, but 2005 was an unprecedented year with some particular one-off events and super-human fundraising efforts by the Forsyth family in North East Scotland. A charity of our size will do well to match 2005 in the future, but 2006 was still a good year and we hope that 2007 will see us reach our target and enable us to support two research projects.

Yet again we ask for your help to reach our research funding goal, and to try and makes things simpler we have created a fundraising pack that you can request via the website.

Many people have been involved in raising money for the Foundation over 2006, from cake sales, bridge playing days, golf days and dance nights. And we thank each and every person for the time and talents they have donated. In particular we would like to thank Paul Clifford, who has raised over £3,000 by cycling over 800km along an old pilgrim route in France and Spain. The cycle itself took over 10 days, but this does not include the months of training by Paul, as well as the time, skills and equipment given freely by others.

Along with the fundraising, we have heard about your personal stories, including a group trip to visit the Sea Life Centre in Birmingham. Furthermore, there was the International Genetics Conference in Brisbane, CLIMB’s 25th Anniversary Conference in West Bromwich and we have had updates from the researchers we are supporting in the UK.


Aden Country Park Sponsored Walk
Aden Country Park Sponsored Walk

Birmingham Sea Life Centre Visit
Birmingham Sea Life Centre Visit

In 2007 the Cystinosis Foundation UK are hoping to organise a conference where there will be various lectures, group sessions and other activities aimed at those either suffering from, or involved with, Cystinosis. The conference is likely to be in June and somewhere in North England to allow people from all areas of the country to attend. More details on this, once dates and venues are finalised. I am personally hoping to attend this year and will make an effort to do so, but this might be slightly harder because…

I am delighted to announce that my wife is pregnant and due to give birth around the middle of May 2007! So travelling might become a little harder around that time. When planning to start a family, Cystinosis is always a concern for the relatives of those with Cystinosis as the risk of having a Cystinotic child is some what increased, given it is caused by a defective inherited gene. As our niece has Cystinosis, we chose to have blood tests a few years ago to see if we would face this risk. It is a personal decision whether or not to have this blood test, and how you use the information gained thereafter, but we feel it is important that people are aware that the test exists and that it can be performed before you choose to start a family.

We are fortunate that many people have helped the charity over the past year and it is important to us that we thank each and everyone of you for the efforts you make in helping the Foundation, but also in assisting those with Cystinosis and their families. Over the year we have received emails from people whose have friends or family recently diagnosed with Cystinosis who ask "what can we do to help them?" – the emotional support offered is as important as the actual physical things you do, but is sometimes less tangible and often less remembered or thanked.

We hope you will continue to support us in 2007. We wish you a Merry Christmas and hope to see you at the conference in 2007!


    Warmest Regards,

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

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