Weʼre raising £500 to send the Joblings to the Chromosome 18 Europe Family Conference, Glasgow so they can learn more about Eloise's syndrome
- 1 day to go
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I would assume that to most people hearing about Eloise’s syndromes will be a surprise. To anyone who knows her the things that make her stand out are the way she laughs, how feisty, smart and beautiful she is. The fact that she can more than hold her own against her peers make it easy to miss the fact that on the inside her chromosomes look different.
Eloise has 2 syndromes, both are rare and having them together is even rarer. 4q duplication and 18q deletion. Since Amy and Paul received the diagnosis of Eloise’s syndromes 18 months ago they have been determined to try and learn as much about them as they can so they can be as prepared as possible for anything they may face as Eloise gets older. Being able to go to this conference and laugh, learn and play with other families affected by this syndrome and be able to hear about new research rather than trying to read and absorb it from a computer screen after a busy day of work will be a huge help to this special family.
The conference is European and is being held in Glasgow from 22nd – 24th June, unfortunately Amy & Paul have only recently found out about it and have already committed to a family break to Butlins this year which is non-refundable so they aren’t able to find the money to fund another trip at such short notice. As the conference is European its very unlikely it will be held in the UK again in the foreseeable future meaning it will likely always be something that is not financially achievable. With sadness Amy & Paul accept this but wouldn’t it be great if we can come together and enable them to take up this opportunity to learn more about Eloise’s syndrome and how they can support her and how great for Eloise to be able to play with children who are as special as she is and have those memories to look back on.
The 5th Chromosome 18 Europe Family Conference is on 22nd – 24th June in Glasgow. The conference tickets cost £100 in total and the hotel costs £320 with the petrol costs being around £80. Bringing the total to £500. If you cant afford to give please think about whether there’s something you could do socially or at work that could raise a few pounds…..I’m going to sell some cakes in the office.
Thank you for your time. If you want to chat about the ways you can fundraise offline drop me an email email@example.com
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May 2, 2018
Apr 28, 2018
I know how important it is to connect with people who share your medical condition. Hope this helps a little x
Apr 27, 2018
Amazing thing to do for lovely people thanks and sorry bit late doing this!! Xx
Apr 26, 2018
Apr 25, 2018
Good luck hope you get the info you need x ❤️💞 much love. People are amazing and helped me and my family loads so wishing you all the best xxx
Apr 25, 2018
Best of luck guys, I hope you find some answers to help your beautiful girl :-)
Apr 25, 2018
Best of luck to you all, love Auntie Barbara x
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