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Project information

CMT: A Practical Guide - update!

We have an excellent book called CMT: A Practical Guide, which gives information on every aspect of living with Charcot-Marie-Tooth disease. This book is now 6 years old, and we'd like to update it, upgrade it, and generally it accessible for even more people.

July 2012 - December 2012

Charity information: CMT United Kingdom

CMT United Kingdom logo
  • Need


    Lack of knowledge - as simple as that! Many people who have CMT don't know how to manage it, the best techniques and feel isolated by this lack. Additionally, the book is also an excellent resource for people caring for those affected - family and professionals.


    By providing this information in an accessible range of media, we will be able to promote this resource to the widest number of people possible. We aim to publish the book on paper, as a .pdf download from our website, and as a Kindle book through Amazon ( and .com)

  • Aims

    Aim 1

    To ensure the book is brought as up to date as possible


    » to work with specialist both here and around the world to ensure that the book contains the best evidence based information
    » to collaborate with other CMT organisations around the world to ensure that they have some input
    » To publish the final book in as many different formats as possible

    What success will look like

    Success will be... the publishing of the book on Amazon and to start receiving many orders from around the world

  • Impact


    Ideally the project won't bring about any long term changes for us as an organisation, but for every individual who purchases a copy, their health and management of their condition will improve.

    As an organisation, it would be hoped that these new people will also become a member of the organisation, thus increasing our membership, and therefore our impact, dramatically.


    The risk is that no one will purchase a copy! However, we know from previous editions that with proper promotion, via our website, Facebook pages, and through our regular magazine, that this is unlikely.


    Through our regular magazine, ComMenT, and via direct reporting.

  • Budget

    Budget - Project Cost: £11,789

    Loading graph....
      Amount Heading Description
      £1,141 Scoping initial meetings with writers and contributors
      £2,130 Research meetings with professionals
      £3,591 writing professional writers putting the book together
      £1,293 amending amends and re-writes
      £836 management professional management costs
      £1,798 VAT VAT
      £1,000 Travelling meetings/travelling costs for volunteer collaborators

    Current Funding / Pledges

    Source Amount
    CMT Assocation £3,000 Conditional
  • Background


    The book will be written in London, but it's scope will be international, aimed at CMT sufferers wherever they are in the world


    Anyone affected by CMT - person with the condition, family, friends, medical professionals etc

  • Why Us?

    Why Us?

    As the UK's only support group for the condition, we are ideally placed to co-ordinate the book writing from a position of knowledge and authority on the subject. We know the best medical professionals and have regular contact with people from all over the world who can help.

    Read more about the Charity running this project.


    Karen Butcher

    co-ordinating the project - liaising with writers, medical professionals and other CMTers

    John Isitt

    Managing Director of Resonant Media Ltd who will be doing the researching/writing of the book

    Patrick Livney

    Director of CMTA - the other organisation in the USA who will be a major contributor, both financially and with support and information

    Mary Reilly

    Consultant Neurologist and Patron of CMT UNited Kingdom - who will be the main contributor of the latest information on the subject