The Project

One of the aims of this site is to bring together all those who know someone/who suffers from Dystonia. Too often people feel left out either because they are not a member of a national organisation, they feel the organisation does not represent their views, the branch meetings are too far away to attend, they do not have access to a computer/the internet or they know no-one else with Dystonia.

We cannot remedy all that – but at least an attempt can be made!

We aim to create a ‘Dystonia book’ this is along the same lines as that coordinated by the BBC when they did the 'Book of the Future'. The BBC said:

“Welcome to the first democratically edited book. From November 2002 until March 2003 the audience to this site wrote and then voted for their favourite articles. The subject matter was 'the future in 2020'. Of the five hundred or so edited articles on the site the top seventy six, as voted on by you, were published [the seventy seventh article was by Douglas Adams, who had the original idea for the Book of the Future].”

Our aim is also to produce a ‘democratically edited book’ based entirely on your submissions. There are several categories for the submissions as shown below. This element of the site will be open until Easter Day 2004. After that date the book will be collated and, depending on the size, visitors to this site will be asked which articles to include/remove. Clearly if there are thousands of pages then we will have to shorten the book – but if there are just a couple of hundred then it will be distributed ’as is’.

The final book will be printed and distributed to all branches of the UK Dystonia society for them to distribute to members. Copies will also be sent to doctors/specialists to give to patients.

Also anyone and everyone who asks for a copy will be sent one. If the request is from outside the UK then – depending on finances – we may have to ask for postage.

This book, which will reflect the writings of all those with Dystonia, will be distributed within the UK entirely free. To help finance such a service we have contacted several sponsors. Their responses will be displayed on the site here.

First of all we need a title!!! If you have any ideas for a title please submit your idea using the site suggestions page.