During my preliminary work I made contact with an organisation in the United States called the 'Cystinosis Foundation US' and decided with their permission, and help, to set up a similar organisation in the United Kingdom. This organisation will work closely with the original and with any other Cystinosis Foundations set up around the world to promote knowledge of and research into Cystinosis, although the primary aim of Cystinosis Foundation UK is to provide information and support for Cystinosis patients and their families. I hope to facilitate this by attending the Cystinosis Clinics around the country on a regular basis and by organising regular social gatherings for all those involved.
As previously stated, the ‘Cystinosis Foundation US’ is long established. This organisation has proved to be very successful and I am
working very closely with them. The response that I have had from fellow patients and medical practitioners so far in the UK
and Eire has been tremendous and I cannot see why Cystinosis Foundation UK will not also be as successful as its American counterpart.
We are in contact with a great many other Cystinotics and have arranged meetings with various companies and groups who wish
to support our work.
I am fortunate in having the backing of ‘Children Nationwide Research Laboratory’ based at Guy’s Hospital in London,
of Geraldine Ward, of all the Cystinosis Specialist Medical Centres contacted so far and of the
‘Cystinosis Foundation - US’.
Due largely to my own condition I have been involved with several charities in the past, including the Guy’s Hospital Kidney Patient Association (where I held various offices), Sidney Kidney Berkshire, Realtime Video Collective in Reading, the Bosnian Youth Trust and the Reading PHAB (Physically Handicapped and Able Bodied) Club, where I met my wife. I have worked full-time most of my working life, but have now taken on the role of Founder of this organisation on a full-time basis. I wish to devote my life to my fellow Cystinosis patients and their families, who require tremendous support. Just being able to communicate with other people in a similar position, or who have been through the problems that other Cystinotics are experiencing, does provide much of the support required.
As more patients progress into adulthood, it is my aim to organise seminars in which experiences and information can be shared. I believe that in this way we can offer hope and reassurance to Cystinotics in Britain which, up to now, has not been available to such a specialised level.
Also, over the next two to three years I hope to be able to provide cheap, reconditioned personal computers for every family which does not have access to the Internet, in order to provide electronic mail communication for all Cystinotics. This, I believe, is a vital and cheap method of communication for one hundred and fifty Cystinotics in this country, so that all patients can be kept fully and immediately informed as to the progress being made.
You can learn of our activities, on our activities page.