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The Board Of Trustees

Meeting together 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...

Gareth Jackson
Chairman - Gareth Jackson

Joined: March 1999
I am the proud father of two children, Robert 14 and Laura 11, with Robert having been diagnosed with Cystinosis when 6 months old. We visit Guys & St. Thomas's hospital quarterly to receive excellent support, but I know that this is not always the case. So when Jonathan set up the Foundation in 1998, I was glad to accept the position of Trustee Chairman. I obviously have practical knowledge from 14 years of living with the issues that Cystinosis brings and also add a knowledge of management & IT to the Foundation from my work for Honda.

Paul Doyle
Treasurer - Paul Doyle

Joined: March 1999
I have known Jonathan Terry for many years and was very pleased to assist him with the setting up of the trust and obtaining charity status for the Foundation. I have been one of the trustees and the treasurer since its inception. I have worked in the finance sector for all of my working life and am currently with one of the major banks. I am a member of the Society of Trust and Estate Practitioners. I am married with three children.

John Terry
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.

Roy Forsyth
Trustee - 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.

Johnathan Terry
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.

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	Chairman - Gareth Jackson Joined: March 1999 I am the proud father of two children, Robert 14 and Laura 11, with Robert having been diagnosed with Cystinosis when 6 months old. We visit Guys & St. Thomas's hospital quarterly to receive excellent support, but I know that this is not always the case. So when Jonathan set up the Foundation in 1998, I was glad to accept the position of Trustee Chairman. I obviously have practical knowledge from 14 years of living with the issues that Cystinosis brings and also add a knowledge of management & IT to the Foundation from my work for Honda.

	Treasurer - Paul Doyle Joined: March 1999 I have known Jonathan Terry for many years and was very pleased to assist him with the setting up of the trust and obtaining charity status for the Foundation. I have been one of the trustees and the treasurer since its inception. I have worked in the finance sector for all of my working life and am currently with one of the major banks. I am a member of the Society of Trust and Estate Practitioners. I am married with three children.

	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 - 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.

	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.