This year the Cystinosis Foundation UK celebrated its 10th birthday and it could be said that our small charity has now come of age. We may not have had our biggest fundraising year, nor has the year been dominated by a single event, such as last year’s conference. However, it has been a consistent year of growth, a year of change, a year when previous investments in research have shown some buds of fruition and for those involved with the Foundation, certainly one of the busiest.
One of the key changes to the Foundation happened early on in the year. Paul Doyle retired as treasurer and we are grateful for his many years of service. Gareth Jackson stood down as chairperson and took over the role of treasurer, whilst existing committee member, Roy Forsyth took the role of chairperson. In addition, two new members joined the committee, David Benford and Neil Sugden. The committee is responsible for all key aspects of running the Foundation and all its members, in conjunction with Founder, Jonathan Terry, give up their time and talents on a voluntary basis.
Research at Sunderland University, to improve the effectiveness of medication for treating Cystinosis, has shown positive progress and we have committed £93,000 over the next 3 years to help continue their work. We are also committed to supporting research at the Robert Gordon University, Aberdeen. Furthermore, both universities are looking to work more closely to take advantage of synergies between their research.
This research only occurs if we have funds to support it, and fortunately we’ve had numerous fundraising activities over the year to support our efforts. I stood up from the computer and sat down on the bike to undertake the One Person One Mile challenge. In addition, we have had disco nights, social evenings, swimmers with sharks, and runners to name only a few of the activities that have taken place this year, along with some significant donations.
At the time of writing, over £22,500 has been raised this year. This is short of our target of £50,000, but some recent events look set to greatly increase this total. Continually raising money is not easy and it can quickly be spent on medical research. Therefore we are grateful to everyone who has supported us – every pound raised is a pound closer. Please please, Get In Touch if you wish to help us! Simply being involved with designing our new logo helps us raise our profile. And if you shop on-line you can help with an extra few clicks of a mouse at our online store.
The Foundation’s profile has been raised greatly this year through coverage in the national press and regional television. Awareness is as important as research. Making medical professionals aware of Cystinosis greatly assists in earlier diagnosis and better treatment, so supporting grass root level activities such as lectures to medical students (including those from Don Cairns at the Robert Gordon’s University this year) are key.
Next year also sees the biannual International Conference and this time it will be held in northern Italy, not too far from the wonderful city of Venice. The full programme has yet to be released, but the conference is an important event for researchers who have a rare opportunity to meet peers and exchange ideas. However, there is also a great focus on families and individuals, as well as it being an even rarer chance for many of us to meet. The Foundation hopes to be represented at the 2010 conference and we hope you will consider attending too, if possible.
We thank everyone for their support over 2009 – it’s been a great year – and hope that you will continue to support us in 2010. There is still so much to do! For now, Merry Christmas from everyone at the Foundation and best wishes for the New Year.
Matt Blackham, Dec 2009