Our Charity

The charity was founded in 1998 by Jonathan Terry, the oldest surviving cystinosis 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

  • Nov 2012
    £125,000 additional funding for the pro-drug research project at Sunderland University.
  • Sep 2011
    £12,608 in funding for the pro-drug research project at Sunderland University.
  • Apr 2011
    £12,608 in funding for the pro-drug research project at Sunderland University.
  • Oct 2010
    Purchased a new High Pressure Liquid Chromatograph unit for the University of Sunderland to assist their research.
  • Sep 2010
    Funding for PHD student Barbara Buchan of The Robert Gordon University to attend the International Cystinosis Conference in order to present results.
  • 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.

Comments are closed.

Jonathan Terry Has Sadly Passed Away We are very sad to report that our founder, Jonathan Terry, died peacefully in his sleep on 9th [...] Read more...
10th March 2019 – Movie Music Magic Concert On 10th March 2019 the Cinematic Syncopations Orchestra are hosting an afternoon of music from [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] Read more...
All website content copyright Cystinosis Foundation UK (Charity No.1074885) 1997-2013, except where explicitly stated.
Data Protection Act Registration Number: Z9880997. Please refer to our terms and conditions and our privacy policy.