help. She wants ideas for one of the most difficult things of all - how to raise money for medical research into something which appears to be obscure but is actually a problem which potentially affects everyone.
Jen has EEC syndrome and she has written about one of the many side effects here http://jen-campbell.blogspot.com/2011/08/what-i-talk-about-when-i-dont-know.html and here is what she wants to try and do http://jen-campbell.blogspot.com/2011/10/thinking-caps.html
Jen has a brilliant and wicked sense of humour. She has a contract for a book about the weird things people say in bookshops. Did I mention she runs a second hand bookshop in London? Go and look at her blog to discover more. Jen is also highly intelligent. She writes poetry and short stories - and she gets them published. She gets things done. I have no doubt she will do something to raise some funds for EEC syndrome research.
But why should it matter to the rest of us? Does anyone else reading this blog have EEC syndrome? I do not know. It is rare. It is unlikely.
That however is not the point. Research into one genetic disorder always has the potential to assist people with other genetic disorders. It also has the potential to assist in research into things like cancer. All these things cost lives, cause misery, cost money and need to be considered.
The search for the charity dollar or pound or euro or whatever is always going to be there. Research will always need funds. I do not have the financial capacity to support what I would like to support so I like to support friends and things I know about at a personal level. Ideas do not in themselves cost money. Can you think of something unique, witty, fun and fundraising? If so, please prowl on over to her blog and leave them there. Thankyou.
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Thanks Cat! If a cure is found for this - if they can use stem cell research to create an artifical cornea that doesn't use a person's genes to reproduce [which would make it reproduce incorrectly in this case], but instead is an artificial cornea which reproduces itself, then it will help not just people with EEC Syndrome, but all different kinds of degenerative eye conditions. It would be a major break through. The money will go to all kinds of EEC research centres which do specialise in cell mutation/clefting, and look at cancer research too, so it could help all manner of things x
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