Our Charity

Our History

The charity was founded in 1998 by Jonathan Terry, the oldest surviving cystinotic patient in Europe. In concert with the Trustees that he assembled, Jonathan established the aims for the Foundation and wrote the Constitution.

Charity status was achieved in March 1999 and a launch conference was held that April in Leeds. Since that time significant funds have been raised for research related to cystinosis, many patients and parents have been helped with advice and support, and awareness of cystinosis among the medical community has been raised.

Achievements To Date

  • Jan 2009 Research grant of £93,000 over 3 years to the University of Sunderland to pursue development and testing of Prodrug formulations.
  • Nov 2008 Research grant of £26,335 to the Robert Gordon University, Aberdeen for research to develop suppository delivery of active in Cystagon and work on eyegels.
  • 2007 Fundraising Standards Board Approval obtained.
  • 2006 Committed £22,250 for one year Research Assistant to continue Produg work at University of Sunderland.
  • 2006 Reached £100,000 Research Fund target in December. Launched appeal for 2nd £100,000.
  • July 2005 £2,542 grant to the Cystinosis Research Group at the Robert Gordon University, Aberdeen for purchase of equipment.
  • 2004 Launch of £100,000 Research Fund Appeal
  • 2004 National Conference at BioCity Nottingham.
  • 2003 3-year research grant to the University of Sunderland to pursue the formulation of Prodrugs.
  • 2002 First Research Grant of £12,000 to the University of Sunderland for preliminary study into a prodrug approach to the delivery of the active ingredient in Cystagon.
  • 2001 National conference in Walsall. William van’t Hoff agreed to become President of the Foundation.
  • April 1999 Launch conference.
  • March 1999 Charity status granted.