ETA: Wow! Over $1000 in two days! Thank you all so much. I can't edit the target on here now that the fundraiser has started, but onwards - let's raise as much money as possible. If you could donate $1, $2... whatever you can, that would be amazing. Keep spreading the word. xx
My name's Jen [hi!] and I'm a writer and bookseller living in London, UK. I also have EEC Syndrome, which is a rare form of Ectodermal Dysplasia. New research has shown that, due to a fault in the p63 gene, people with EEC Syndrome can suffer progressive sight loss because of their corneas reproducing incorrectly. At the moment there is no cure for this. I wrote a blog post about me being told this recently over here. So, I'm doing a fundraising event to raise money for the research centres who are looking for a cure, and who are are also doing research into better understanding and helping out in other areas affected by EEC Syndrome.
What I'm DoingI'm writing 100 poems in just one weekend: 5th & 6th November. I'll be posting them online as I write them over at 100poemweekend.blogspot.com. On the run up to this weekend, I'm asking people to give me tag words. You can suggest one by dropping me an email [link over on my blog], or tweeting me @aeroplanegirl. Each of the poems will be inspired by a tag word, and the person who gave me that tag word will be credited within the blog post.
[Previous to this challenge, I've had poems published in places like The Rialto, Poetry London, The Interpreter's House and Agenda. You can read some of those, over here.]
Where the Money is Going
EEC International research centres are doing all kinds of wonderful science-y things to try and find a cure for degenerative eye conditions [a cure which, if found, would not only benefit people with EEC but those with a whole range of different eye diseases]. EEC International also do work on lots of other things to do with clefting, cell mutation, p63, plastics, dermatology, hearing problems, all kinds of stuff. Only the other week Moorfields eye hospital in London [which is where I go], were given the go ahead to start trials on stem cell treatment for people with Stargardt's macular dystrophy, which causes progressive sight loss. This is all to do with retinas, a different ball game to corneas [EEC Syndrome], so separate from this particular problem, but it shows what money and research and science can do: wonderful things.
I would really love it if you could get behind this charity and sponsor me to provide you all with many/lots/plenty of pretty words. Through this page you can donate money - however much, however little. Tell your friends; spread the word. Thank you. Lots of love xx
* Exchange rate is currently approx. $1.6 -> £1.