The Cystinosis Foundation UK has a board of trustees who meet on a regular basis to discuss recent events, future strategy and how best to utilise our resources to their greatest benefit. The board all have different backgrounds, experiences and skills that help them to steer the Foundation as a collective in order to fulfill our aims. All have different connections with Cystinosis. And all give their time freely.

In conjunction with the board, the charity’s founder, Jonathan Terry, works on a voluntary basis taking care of the day-to-day running on charity.

However, it is best to let them introduce themselves…

	Chairperson – Roy Forsyth Joined: Oct 2005 Hi, my name is Roy Forsyth and I live in the North East of Scotland. I became involved with the Cystinosis Foundation as my daughter is a sufferer. My wife and I initially discovered the Foundation on the internet and since then we have primarily been involved with fundraising for the research appeal. However, in 2005 I also joined the Foundation as a trustee and in 2009 became the chairperson.
	Treasurer – Gareth Jackson Joined: March 1999 I am the proud father of two children, Robert 18 and Laura 14, with Robert having been diagnosed with Cystinosis when less than 6 months old. We visit Guys & St. Thomas’ hospital regularly to receive excellent support, but I know that this is not always the case for all cystinotics in the UK. So when Jonathan set up the Foundation in 1998, I was glad to accept the position of Trustee Chairman and have recently moved role to become Treasurer. I obviously bring practical knowledge to CFUK from 18 years of living with the issues that Cystinosis brings, but I also bring management & IT skills from my work for Honda.
	Secretary – John Terry Joined: March 1999 As I am Jonathan’s father, I have been involved with Cystinosis for over 40 years, although we did not know it for the first 7 of those. Since I retired I have become a Trustee of the Foundation and am the secretary. I spent most of my working life with the Gillette Company working in research and development and although the work was not medical or drug related, it did give me experience which has proved useful in what I do for the Foundation.
	Trustee – David Benford Joined: January 2009 I am the doting father of Darcy. She was born in 2001 and was diagnosed at 10 months with Cystinosis. Darcy is particularly lucky as, by sticking to a strict regime of medication, she is rarely sick and takes all her drugs orally. She is a patient of Birmingham Children’s Hospital, who do a fantastic job for her. I am a company director and I am also currently reading for an MSc in Forensic Computing part-time at the University of Derby. I enjoy keeping fit and I’m a student of wado ryu karate. I do as much as possible for the Foundation and I currently look after publicity.
	Trustee – Neil Sugden Joined: January 2009 Hi. I am Neil Sugden. I have recently joined the Foundation as a new Trustee, with the role of fundraiser. I was diagnosed 3 years ago with the late onset type of Cystinosis. I found the Foundation extremely helpful and supportive when I contacted them for information about the condition. I now hope I can give something back to the Cystinosis Foundation and help others who suffer from this rare condition.
	Advisor & Founder – Jonathan Terry Established The Cystinosis Foundation UK In: March 1999 I launched the Foundation in 1999, having been motivated to set up a support group for Cystinotics in the UK after attending a meeting of the US Foundation and talking to its founder. I also consulted the leader of CLIMB, herself a mother of a cystinotic, who agreed that it was time for a separate organisation for cystinotics. Since its formation, I have been the central organiser and dealt with hundreds of enquiries from patients and families.