Cystinosis Family Support Network is unfortunately no longer- the Charity has folded as the Chairman and Secretary (the couple who started it) have moved to Spain with their family and no longer wish to be involved Thank You to everyone who has helped us over the years by donating to help children like Laura with Cystinosis. Crystal, Kevin, Christopher and Laura xxxx Laura then: http://www.cfsn.co.uk/family_stories/herring.htm Laura now: http://www.postpals.co.uk/pals/Laura+H
Was considering it but have decided we will still fundraise but send the monies to Cystinosis UK http://www.cystinosis.org.uk/ The man who set up this Charity, Jonathon Terry is the oldest surviving Cystinotic in the UK. He was born in 1962 so it gives us comfort to know that Laura has a chance of a longer life than first thought.