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Welcome to the MDF

The Myotonic Dystrophy Foundation (MDF) is a patient advocacy group dedicated to leading and mobilizing resources toward effective management, treatment, and a cure for myotonic dystrophy, a common form of muscular dystrophy. This inherited disorder can appear at any age and can manifest itself differently in each individual. It affects not only muscle groups but also many other body systems such as the heart, lungs, brain and GI tract, among others. With guidance from our advisors, who together have devoted more than ninety years to the research and treatment of myotonic dystrophy, the MDF offers information to help navigate the disease process.

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Latest News and Events

11/24/2008
Grammy Medallion Auction to Support Myotonic Dystrophy Research

Bid on the Grammy nomination medallion awarded to Randy Blythe (lead vocalist for “Lamb of God”) for “best metal performance” at the 49th annual Grammy awards.

11/10/2008
Seeking Parents of Children with Neuromuscular Diseases...

A graduate student in the Genetic Counseling Program at the University of Maryland School of Medicine in Baltimore is conducting a large-scale survey of what parents of children with neuromuscular disorders know about the genetic basis of their child’s condition and how this information was obtained.  The investigators hope to improve parental education in this area. 

10/8/2008
MD-CARE Act Signed Into Law Today!

The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008 received final Congressional approval on Saturday, September 27, 2008. As expected, the President signed it into law today, October 8, 2008.

The approved legislation – which reauthorizes and updates the MD-CARE Act of 2001 - will escalate research and the development of treatments for several forms of muscular dystrophy.

9/27/2008
MD-CARE Act Receives Final Congressional Approval

The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008 received final Congressional approval on Saturday, September 27, 2008. It now goes to President Bush, who is expected to sign it.

The approved legislation – which reauthorizes and updates the MD-CARE Act of 2001 - will escalate research and the development of treatments for several forms of muscular dystrophy.

8/21/2008
IDMC-7 - International Myotonic Dystrophy Consortium Meeting

 The International Myotonic Dystrophy Consotium (IDMC) is holding it's 7th annual conference (IDMC-7) on myotonic dystrophy, September 9 - 12, 2009, in Würzburg, Germany.

100 Years after the first description of myotonic dystrophy by Hans Steinert (Leipzig, Germany), IDMC-7 congress chairmen, are delighted to invite you to the city of Würzburg. Würzburg is deeply linked to one of the original describers of DM2, Kenneth Ricker. In memory of both scientists, they are pleased to invite you to join this anniversary congress in September, 2009.


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 Note: Content on this site was developed through collaborative efforts of internationally respected experts in the field of myotonic dystrophy, and by patients and families whose lives and loved ones have been touched by this disease. All disease content has been read and approved by  members of the MDF Medical and Scientific Advisory Committee. 

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