Myotonic Dystrophy Publications

The Myotonic Dystrophy Foundation (MDF) publishes resources for people living with myotonic dystrophy (DM), their families, their providers, and others involved in their care or concerned with their safety, health, and happiness.

Please email MDF at to request any publication available in print.

These publications are for a general audience to help understand the condition and various aspects of life with DM.

*New* Myotonic Dystrophy and Mental Health Handbook: This handbook aims to provide information on many of the ways mental health can be impacted by DM. Although DM has the potential to impact cognitive health and development, this resource emphasizes the social and emotional impact of the disease. We hope to give the reader an overview of possible mental health issues that may affect people living with DM and potential resources.

These publications are for professional audiences – especially doctors and nurses – who treat and care for individuals living with DM. MDF urges families to share these resources with their providers.

The Facts: Myotonic Dystrophy, by Prof. Peter Harper, published by Oxford University Press, 2002. This hundred-page book is written in easy-to-understand language for families affected by myotonic dystrophy. It’s a good place to begin educating yourself. Available online at Oxford University Press or

The Christopher Project Report: Report to the Myotonic Dystrophy Community: In order to better understand their needs, the Christopher Project asked patients with myotonic dystrophy and their family members/caregivers to report directly on their own experiences, from their own perspective, as experts in their own right. This report complements existing research and offers important, new insight into the myotonic dystrophy experience.