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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


Myotonic Dystrophy Foundation


Address

663 Thirteenth Street
Suite 100
Oakland, CA 94612 USA

Phone

415-800-7777

800 Number

866-968-6642

Email Address

[email protected]

Description

The Myotonic Dystrophy Foundation (MDF) is a voluntary organization that works closely with its medical and scientific advisors to accomplish its mission to lead and mobilize resources toward effective management, treatment, and ultimately a cure for myotonic dystrophy. MDF works to achieve this goal through education, advocacy, and research. Myotonic dystrophy type 1 (DM1) is an autosomal dominant, multi-system disorder that affects both smooth and skeletal muscles and may affect the central nervous system, heart, eyes, and/or endocrine systems. There are three types of DM1 that are distinguished by the severity of disease and age of onset. Mild DM1 is characterized by cataracts and sustained muscle contractions (myotonia). Classic DM1 is characterized by muscle weakness and wasting (atrophy), cataracts, myotonia and abnormalities in the heart’s conduction of electrical impulses. Congenital DM1 is characterized by muscle weakness (hypotonia), difficulty breathing, mental retardation and early death.

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