I’ve been involved with the Foundation now for around 6 years. Over those years I’ve had the opportunity to meet with many inspiring individuals, hear from people training and then succeeding in a particular challenge in order to raise money for Cystinosis research, see that money be used to support projects and see those projects progress. However, looking at the Cystinosis community as a whole, I’d say this has been a particularly busy and exciting year!
The highlight of the year was the International Conference held in Lignano, near Venice, Italy. This was a chance to meet medical professionals, researchers, Cystinotics, their family and friends from around the world. People came from as far away as Australia, America and Russia. There were also many attendees from the UK, including a few members of the UK Foundation.
The theme of the previous 2008 conference, in Dublin, was “Dreams to Reality”. At this year’s conference it was hugely encouraging to see the progress that has been made in so many projects, as well as seeing awareness of Cystinosis growing around the world, particularly in Russia through the work of Alexey Tsygin and Mikhail Kagan. In terms of the research, however, the big talking points were two particular research projects – one involving stem research that has the potential to result in a cure for Cystinosis (although such a cure is many years away), the other a twice-daily cysteamine treatment that is in third trial stages, with a distinct possibility of being released to the market within 2 years. You can read more about the conference and these projects in our Conference Report.
The research projects that the Cystinosis Foundation UK supports at both Sunderland University and Robert Gordon University are also showing great progress. In Sunderland they have successfully narrowed down the pro drug compounds they hope will produce improved treatments for Cystinosis, whilst the results of eye gel research at The Robert Gordon University are also showing very positive signs. The teams at both universities have many years of hard work ahead of them, but the fruits of their labours are beginning to show. Again our Conference Report details the progress of both universities.
We are proud to be to support these projects, but this is only possible because of the work performed by all our supporters. Everyone involved with the Foundation does so on a voluntary basis, often around full-time jobs and family commitments – and often that is a family with one or more Cystinotic children. Therefore, we are so fortunate to have many supporters who undertake a huge variety of activities and have helped us reach our £200,000 research target earlier this year! Thank you each and everyone of you! We have had cyclists, marathon runners, people hiking through snow and storms, support from a motor cycle racer, people making cards and children’s toys, concerts, market stalls – you name it, one of our supporters has probably done it.
There have of course been lows. Despite all the research progress, and improved awareness and understanding, Cystinosis is still a tough and, in some cases, life-ending condition. Over the year we have heard of the passing of several individuals with Cystinosis. We can only say to the families affected in this way that our thoughts are with you, particularly at this time of year. And we aim to work hard over 2011 to keep stepping closer to better treatments and ultimately that cure we all hope is out there.
We are pleased to say that a few events planned are already planned for 2011 – Martin Kemp is running the London Marathon in May, we have a sponsored music concert in Kent during the summer, and Nikki Wood is still selling her hand made cards on Ebay.
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The Cystinosis Foundation UK hope that 2011 is another big year and with this year’s positive news from the research community we can all know our efforts are worthwhile. We hope you will continue to support our work. For now, we wish you all a very Merry Christmas and Happy New Year!
Matt, on behalf of the Cystinosis Foundation UK