Her er teksten fra Sara Mole:

In 1999 a book "The neuronal ceroid lipofuscinoses (Batten disease)" was published by IOS Press under the auspices of a Concerted Action supported by the European Commission that brought together many of the laboratories in Europe with an interest in the neuronal ceroid lipofuscinoses (NCL)/Batten disease. This book was very well received with more than 400 copies sold. It described each type of NCL in detail and was used by families, carers, clinical professionals and research scientists. However, since then new genes have been identified and there is a greater understanding of the biology of the disease, new model systems and animal models have been developed and the first trials of therapy initiated. It is time to publish a second edition that will be the definitive reference work for the next decade and can be consulted by clinicians, research scientists, diagnostic laboratories, families affected with the disease and industry planning translational research. The 2nd edition will have the same format as the first and will retain the valuable clinical and morphological information. Already existing chapters will be updated and new chapters will be written by experts in their respective fields. The book is planned at 300 pages, a 50% increase in length on the 1st edition. The 2nd edition will be edited by two of the original editors (Sara Mole and Hans Goebel) together with a clinical expert (Ruth Williams).

We are aware that you have an interest in the NCLs. We therefore write to ask if your organisation will consider a donation to help in the costs for production of this book. The editors, authors and secretarial assistance receive no payment for their services, nor royalties on sales. There will be pre-production costs to allow the editors to meet occasionally to plan and monitor and finalise the contributions (budgeted at a maximum of £2000, to cover travel, hotel accommodation and subsistence). There is also a production cost required by IOS Press of €9500 which includes the provision of copies of the new book. These will be distributed by the editors to those who have helped in the production of this book, by providing financial support, writing sections of the book etc.

It is expected that one book per unit donation of €100 will be distributed. Further books will need to be purchased at the currently unknown price that will be charged by IOS Press (the 1st edition in 1999 was in the order of €103). Summary of costs (£) (€)

Pre-production 2000 max 2900 max
Production 6550 9500
Total £8550 €12400