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Theano Marrache raised £170 from 10 supporters

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Closed 14/09/2018

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£170raised of £200 target by 10 supporters

    Weʼve raised £170 to Research into Cockayne Syndrome

    Funded on Friday, 14th September 2018

    What is crowdfunding?

    Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.

    The page owner is responsible for the distribution of funds raised.

    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.

    Updates

    8

    • Theano Marrache7 months ago
      Theano Marrache

      Theano Marrache

      7 months ago
      Update from the Page owner

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    • Theano Marrache8 months ago
      Theano Marrache

      Theano Marrache

      8 months ago
      Update from the Page owner

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    • Theano Marrache8 months ago
      Theano Marrache

      Theano Marrache

      8 months ago
      Update from the Page owner

      Share this update to help us raise more

    8 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

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    Theano Marrache

    Theano Marrache

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