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Marianne Dinsdale raised £12,896 from 228 supporters

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Closed 17/04/2017

107%
£12,896
raised of £12,000 target by 228 supporters

    Weʼve raised £12,896 to help us make a trip to the NBIA disorders family conference in Chicago and raise awareness of Emilie's rare genetic condition

    Glastonbury, United Kingdom
    Funded on Monday, 17th April 2017

    Don't have time to donate right now?

    Story

    Emilie is our 15 year old daughter. She loves to dance with a passion, smilies like the sun, makes mischief, and especially knows how to flirt!
    Until recently we didn't know why her development was so delayed because since 8 months of age reaching any milestone has been a challenge for her. Genetic science has moved forward apace and through new testing technique Emilie has been given a diagnosis of a rare condition affecting only 5 other people in the UK.
    This condition is called Beta-propellor associated neuro degeneration (BPAN). Over time this condition means that iron is accumulated in the brain and abilities that Emilie has worked hard to achieve are lost. Stunned as we are, we decided to contact the NBIA Disorders Association in the US. They are holding a family conference in Chicago in June 2017. We plan to be there with Emilie to meet specialist doctors, researchers and to meet other families.
    This is where you can help as we know we can't do this alone. We need to build this fund to make this trip to America. Our hope is that we can contribute to understanding this rare condition, to raise awareness, and help with research into effective treatments and possibly one day a cure for this brain disease.

    We are blessed with an amazing daughter with an incredible zest for life. We are also blessed with supportive family and friends and thank you all for your kindness and generosity with our cause.

    Updates

    5

    • Marianne Dinsdale5 years ago
      Marianne Dinsdale

      Marianne Dinsdale

      5 years ago
      Update from the Page owner

      We want to thank our supporter friends who have so generously supported us for our journey to Chicago to meet with specialist BPAN doctors and researchers. Our trip is planned for 26th May and we are looking forward to meeting the other families who are going to the NBIA 2017 conference like us. This is just the start of our longer term journey to raise awareness about BPAN and hopefully to encourage further research in the UK. Thank you once again from the bottom of our hearts for all your messages and generous donations to this page.

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    • Marianne Dinsdale5 years ago
      Marianne Dinsdale

      Marianne Dinsdale

      5 years ago

      Dear Supporter friends, As we are so close to our crowdfunding target of 12k we have decided to extend our site till mid April. We are eternally grateful to everyone who has been involved and given already. Awareness of Emilie's condition BPAN has increased, and because we have been so well supported, more opportunities will arise I'm sure. Our appointment with the specialist doctors has been confirmed for 30th May in Chicago before the start of the NBIA conference. We plan to create a blog so people can follow our progress. Thank you. :)

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    • Marianne Dinsdale5 years ago
      Marianne Dinsdale

      Marianne Dinsdale

      5 years ago

      Hi supporter friends, we decided to extend the time on the giving page as so many of you are still seeking to help. There are so many of you to mention though recently Stuart Neil and colleagues from Cemex completed a sponsored walk, with support from many of their suppliers. Thank you to all of you, especially. So many of our local friends are working hard behind the scenes to make this happen for us. You know who you are and thank you so much. Miracles can happen - I can feel it in my heart.

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    • Marianne Dinsdale5 years ago
      Marianne Dinsdale

      Marianne Dinsdale

      5 years ago

      Hi, we have completed our second week of fundraising, and the support has been sensational! Thank you so much everybody! Hope we can that in person to some of you when we see you next. For those of you we have never met, or you know of us through being linked by friends or colleagues, your kindness is really appreciated. We are on our way to USA, travel plans made, thanks to Pam Roper. We need to keep the fund going to add to the Research. We have some events planned too so please look in on Emilie's website. www.fundraisingforemilie.org.

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    5 years ago

    Marianne Dinsdale started crowdfunding

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    Page last updated on: 4/15/2017 10.02

    Supporters

    228

    • Helen Forsey

      Helen Forsey

      Apr 15, 2017

      I met you and your lovely daughter yesterday!

      £20.00

    • Paul Tuck

      Paul Tuck

      Apr 12, 2017

      Hope all goes well with your trip,best wishes

      £50.00

    • Ruth Hensley

      Ruth Hensley

      Apr 4, 2017

      All good wishes to you all! Love Ruth and Brian

      £10.00

    • Jennifer Young

      Jennifer Young

      Apr 4, 2017

      Hope you have a wonderful trip with Emilie

      £50.00

    • Austin Milne

      Austin Milne

      Apr 3, 2017

      Delighted to see you have met your target!

      £20.00

    • Maria Symons

      Maria Symons

      Mar 29, 2017

      Do whatever you wish with the money Marianne. I'd be more than happy if you saved it for something special for you and Paul when you return. Good Luck with your very special trip, Maria

      £200.00

    • Stuart Neil

      Stuart Neil

      Mar 29, 2017

      To Emilie - Good Luck from staff at Team Support and CEMEX Rail in completing the sponsored walk

      £45.00

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    Marianne Dinsdale

    Marianne Dinsdale

    Glastonbury, United Kingdom

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