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

8/21/2008
IDMC-7 - 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. 

8/18/2008
MDF Launches a New Community Site

The Myotonic Dystrophy Foundation is proud to launch a new community site!  This new part of the MDF website will provide families and friends with a way to find each other, share their family experiences and get support online.

8/17/2008
2008 Family Conference - Register Now!

Mark your calendars!  You are invited to the 8th annual family conference on myotonic dystrophy, September 19-21, 2008 in Manhattan Beach, California.  The sponsoring groups are bringing important research updates, information about diagnosis, treatment, and daily living issues to assist individuals living with myotonic dystrophy, families, healthcare providers and the community.

Print the 2008 Family Conference Registration Form

7/29/2008
New Jersey Marathon for Myotonic Dystrophy Research

On May 4, 2008, Jeff Senkeleski crossed the finish line of the New Jersey marathon! His beautiful daughters, Sara and Loretto ran the last 100 feet while his wife, who is carrying their unborn child, cheered from the sidelines. This was Jeff’s second marathon and an opportunity for him to raise awareness and research funding for myotonic dystrophy in honor of his niece and godchild, Brittany Marie Shea, who was diagnosed in 2004.  Learn more

6/20/2008
Heart Study Published

On June 19, 2008 the New England Journal of Medicine published a ten-year heart study of people with myotonic dystrophy.

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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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