The Foundation is 10 years old!

Foundation secretary, John Terry recounts the major events of the last 10 years.

The Cystinosis Foundation UK has now been in existence for over 10 years. The first meeting of the founding committee, brought together by Jonathan Terry, was held on October 22nd 1998. Present were Gareth Jackson, who became chairperson, Paul Doyle, who agreed to be treasurer, and several members of Jonathan’s family. They drafted the constitution and made plans. The first Newsletter went out in February 1999 and the Foundation was registered as a charity with the Charities Commission during March. The official launch was at a meeting for members in St James’ Hospital (Jimmy’s) Leeds on April 22nd 1999. The Foundation ended the year with £2,000 in the bank.

A national conference took place in Walsall in 2001 where Cystinosis expert Dr William van’t Hoff, of Great Ormond Street Hospital, agreed to become President. By the end of 2001 we had raised at £25,000. This allowed the first research grant to be made in 2002 to a research group at Sunderland University, represented by Dr Don Cairns, for an initial study of the possibility for a Prodrug approach to the delivery of Cystagon. Subsequently, Dr Cairns moved to The Robert Gordons University in Aberdeen (where he has undertaken further Cystinosis research), but the work has continued at Sunderland led by Dr (now Professor) Roz Anderson. We too continued our support for Sunderland University during 2003 with a research grant of £16,000 per year for 3 years.

In 2003 John Terry, Jonathan’s father, became a Trustee and in 2004 the appeal to raise £100,000 for a research fund was launched. 2004 also saw a National Conference held at Biocity in Nottingham. 2005 was the year that Roy Forsyth became a Trustee and Matt Blackham took over the website and by the end of that year the Research Fund Appeal stood at £61,000 and a small grant was made to Don Cairns to purchase a laboratory oven to assist in his research.

Paul Doyle announced at the Trustees meeting in December 2006 that the £100,000 target had indeed been achieved, and we decided to then attempt to raise a further £100,000 since research can be very expensive. A request to fund a research assistant at Sunderland University for 1 year was granted. Also, under Paul’s guidance, Fundraising Standards Board approval was obtained in November 2007.

By July 2008 the Appeal Fund had reached £143,000 and during that year we received three further applications for funding, which committed most of the monies raised. It was agreed to support the work at Sunderland for 3 more years, to support work in Don Cairns group, at The Robert Gordons University, attempting to develop both a suppository delivery of Cystagon and an eye gel, and we also agreed to provide funds for an ‘Adult Cohort Study’, which aims to establish the medical problems met by adult cystinotics, led by Professor John Feehaly from Leicester and Dr van’t Hoff.

Our continued support of Professor Anderson and her team at Sunderland University is also begining to yield results. They have shown that at least one of their prodrug formulations does work to release cystine from cystinotic cells and is non-toxic, both of which were key steps in the development. Successful development of a prodrug will greatly assist in the administration of Cysteamine1.

In November 2008 Paul Doyle retired from his position as Treasurer and Trustee. Despite having no family connection with Cystinosis he has given 9 years valuable service, providing sound guidance throughout. He was succeeded as treasurer by Gareth Jackson, our long serving chairperson. Meanwhile, Roy Forsyth assumed the position of chairperson and two new trustees, David Benford and Neil Sugden joined the committee.

From small beginnings the Foundation has grown into a significant force providing support to patients and funding for relevant research. Looking forward to 10 more years!

1: What is a prodrug? A prodrug is a chemical compound which can carry a drug into the body in a form which gets it at least past the
stomach before it breaks down to release the drug. In the approach being followed at Sunderland University it is carried right into body
cells before being released.

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