Our Charity

Our charity was founded in 1998 by the late Jonathan Terry MBE, who had cystinosis. 

Charity status was achieved in March 1999. Since that time significant funds have been raised for research and family support activity relating to cystinosis, helping many with advice and support, and raising awareness of cystinosis among medical and research communities.

Achievements To Date

• November 2024
  Released research results of a joint survey on the impact on quality of life of different cysteamine treatments, conducted with Metabolic Support UK and Kidney Research UK.
• July 2024
  Partnered with CNE to host the CNE International Conference in Manchester, UK, bringing together patients, families, clinicians, researchers, charities and pharmaceutical representatives.
• October 2023
  Chosen as hosts of the CNE International Conference in 2024.
• September 2022
  Supported the process that led to the commissioning by NHS of three national designation centres or ‘hubs’ for patients in England.
• May 2022
  Contributed as a patient groups towards the approval of Procysbi in Wales.
• April 2022
  Launch of Newsletter series for community members.
• November 2021
  Hosted a virtual webinar open to all.
• November 2021
  Collaboration with Cystinosis Ireland to jointly fund two new research projects.
• July 2021
  Contributed as a patient group towards the approval of Cystadrops for routine usage in UK.
• November 2020
  Started our Cystinosis Connect series of virtual meetings for our community.
• March 2019
  £1.6m MRC Grant awarded to Sunderland University drug research for cystinosis.
• December 2018
  Founder, Jonathan Terry, awarded MBE in Queen’s 2019 New Year’s Honours List.
• February 2017
  Collaborated with Cystinosis Ireland and Cystinosis CRN on 2017 Seedcorn Funding Programme.
• November 2016
  Further funding allocated to CF10 development at Sunderland University.
• July 2014
  Jointly hosted 8th International Cystinosis Congress with Cystinosis Research Network in Manchester, UK.
• June 2013
  New website launched.
• March 2013
  Further funding allocated to Sunderland drug research.
• November 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.