CFSN

Discussion in 'Bulletin Board ARCHIVE' started by JLWBigLil, Feb 7, 2009.

  1. JLWBigLil

    JLWBigLil Well-Known Member

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    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
     
  2. EastStander

    EastStander Active Member

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    Shame to hear

    Shame nobody else could take it on.
     
  3. JLWBigLil

    JLWBigLil Well-Known Member

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    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.
     

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