Review Of The Year

Christmas time is always a time for reflection, and looking back on this year you remember what a year it has been for the Foundation and Cystinosis Research worldwide.

The highlight of the year was undoubtedly the International Cystinosis Conference 2008 held in Dublin at the end of June. This biannual event saw over 200 delegates meeting to discuss scientific and social aspects of Cystinosis to further our understanding of the condition. Along with the academic research presentations were personal accounts of living with Cystinosis and various discussion groups and social events to make this a conference for those of all backgrounds and ages. The theme was “dreams to reality” and a review of current world research, as well as an
historical account of the progress made in the field of Cystinosis by Dr Schneider, shows how far we have come from those initial dreams of making a difference. And the conference itself was exceptionally well organised, for which the Cystinosis Foundation in Ireland must be commended. If you’ve ever considered going, my advice is just go.

Continuing with the international theme, Natalie’s Wish / The Cystinosis Research Foundation in the USA have continued their immense fund raising efforts. These formidible fundraisers have committed $6.5 million (yes – you did read million) to 26 research projects around the world!

Closer to home, we have many supporters to thank for their various fundraising activities over the course of the year. The start of the year saw Alana Munro and Emma Robb from Mintlaw in North East Scotland celebrate their 21st birthdays and raise over £500 from their party. Bob Rumney’s annual golf tournament raised £5,300 and there have been fun runs, “Pampered Chef” evenings and many other events that have helped us make commitments to research. In November we were very pleased to announce a Research Grant Award to the Robert Gordon University for over £26,000.

Commitment to research is something we will continue in 2009 and we have already set out our aims for next year in our 2009 Strategy statement. Hopefully we will be able to make further announcements in this area in the near future.

The Foundation itself is to undergo a few changes. In September we requested applications for a new trustee, with several applications gratefully received, and it is our intention to make some announcements with respect to the committee soon. There are also the various volunteers who give up their time to keep the charity running, including Satinder Seehra who does the newsletter and, more recently, Kate Timmins who has been giving her time and publishing skills to assist me with the website – help that has been gratefully received.

Cystinosis Shopping On-line Please consider helping the Foundation – help big and small is always gratefully received. And remember to use our on-line site for all your shopping. It includes all the big retailers from Amazon to Asda – all you need to do is first go to and select the link to your retailer and they will donate money to us when you complete your purchase – at no cost to you. And often there are exclusive offers via this site and one supporter won £1,000 in vouchers! This site is already raising money for us, so thank you to all who use it – please encourage others to do the same.

For now, from all at the Foundation, we wish you a Merry Christmas and best wishes for 2009.
Matt Blackham, Dec 2008

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