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£170raised of £200 target by 10 supporters

Weʼre raising £200 to Research into Cockayne Syndrome

23 days to go

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Story

Jami (pictured) was born with a rare and fatal neurodegenerative genetic birth defect - Cockayne Syndrome. Cockayne Syndrome (CS) is a devastating condition. CS children suffer from premature aging, growth failure, impaired nervous system development, sensitivity to sunlight, eye disorders and deafness.

Jami is the step-grandaughter of very close friends who live in the US; the step-daughter of my husband's godson. We met Jami last year in Maryland, near Washington DC, and she and I bonded over the fact that we both wear glasses. She is an adorable little girl with a limited life expectancy. CS is such a rare disorder that there are no case studies. You can find some information about the disorder online and there is at least one UK charity, but research into the syndrome is severely underfunded, due to its rarity.

Our friends, together with Jami's mother and others, have set up a not-for-profit organization; the 'National Initiative for Cockayne Syndrome' (NICS), and they organize fundraising events in the US, in order that children like Jami - worldwide - might be saved in the future. I promised to do my bit on this side of the Atlantic.

Any donation, however small, would be greatly appreciated. Thank you.

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Updates

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  • Theano Marrache2 months ago
    Theano Marrache

    Theano Marrache

    2 months ago
    Update from the Page owner

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  • Theano Marrache3 months ago
    Theano Marrache

    Theano Marrache

    3 months ago
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  • Theano Marrache3 months ago
    Theano Marrache

    Theano Marrache

    3 months ago
    Update from the Page owner

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3 months ago

Theano Marrache started crowdfunding

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Page last updated on: 6/9/2018 10:26 AM

Supporters

10

  • Alexandra  Marrache

    Alexandra Marrache

    Jun 3, 2018

    Sending love and luck x

    £15.00

  • Sofia Marrache

    Sofia Marrache

    Jun 3, 2018

    £10.00

  • Anonymous

    Anonymous

    May 23, 2018

    An excellent cause!

    £20.00

  • Leonard Robinson

    Leonard Robinson

    May 23, 2018

    This donation comes with love from Ruth and Leonard

    £30.00

  • Clare Slemeck

    Clare Slemeck

    May 21, 2018

    With love and very best of luck, Clare x

    £10.00

  • Victoria  M

    Victoria M

    May 21, 2018

    £10.00

  • Manya Wayne

    Manya Wayne

    May 18, 2018

    Sounds like a very worthwhile cause and I send Jami all my love

    £30.00

Theano Marrache

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Theano Marrache

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