Jonathan Terry Has Sadly Passed Away

We are very sad to report that our founder, Jonathan Terry, died peacefully in his sleep on 9th May 2019.

Jonathan founded Cystinosis Foundation UK in 1998. For many years he was the charity’s central organiser, dealing with hundreds of enquiries from patients and their families. He was the oldest patient in Europe and was awarded an MBE in the Queen’s 2019 New Year’s Honours List, in recognition of his achievements.

Jonathan will be very much missed by the cystinosis community. Our thoughts are with his family at this sad time. Rest in peace.