Joined: January 2012
I live in Derby and am dad to two children with cystinosis, Eeshar and Avneet, and their elder brother, Raj, who is not a sufferer. My wife and I became involved with the Cystinosis Foundation when it was founded in 1999 after Eeshar was diagnosed. Over the years my wife, Satinder, has been editor of the newsletter and I have done some fundraising, so we are really pleased to be involved closely with the Foundation once more and hope to help move the work of the Foundation in exciting new directions! I have been given the task of putting together a database on worldwide research being undertaken on Cystinosis and so if you know of any then please let me know.