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Hi Margot
Sorry I took so long to reply to your message. We have been away and had problems with mobile phones and computers. Home now. It took a few years for the gene to be found in my epilepsy but the only thing we had to do was send in a blood sample and a couple of interviews. The professor who found it was rewarded. Coming from a large family (five boys and one girl) definitely helped. Two of them are twins and they both have epilepsy. If you did want to be involved in research for Dystonia I am sure two days would be enough to get blood samples. I imagine Dystonia will be hard as we all have such different symptoms.
Talk soon,
Ros
