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Table of Contents

Preface

Introductory Comments

General Questions About FOP

Genetics of FOP

How FOP Affects the Body

Care and Treatment

Activities

Feelings About FOP

Helpful Addresses

Family Resources

Ideas for Independence

Medical Articles

Acknowledgments and Contributions

Acknowledgments and Contributions

This project arose out of an imminent need to provide useful information for parents of children who have FOP. Originally, we anticipated a small booklet for parents and children. However, in the early stages of consultation, it became clear that many members of the FOP family sought useful information on all aspects of FOP. This project, which includes the companion book What is FOP? Questions and Answers for the Children, reflects the thoughts and wisdom of many without whose constant and heartfelt guidance this work would not have been possible.

The great diversity of contributions included the formulation of questions and answers; the stimulation of dialogue; the creation of pictures, sketches, drawings; the contributions of anecdotes and stories; the collection of articles and treatment guidelines; and the constant editorial revision. The editors wish to express their gratitude to each person who contributed to this project. The work will not reach a stage of completion until there is a treatment and cure for FOP.

We anticipate that this book will be the first of many on this topic and will undergo extensive revisions and updates. We thank all of our friends and colleagues for their contributions to this work. We would also like to to thank all of the patients and families who visited Dr. Frederick S. Kaplan during the summers of 1993 and 1994.