Welcome to 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 form of muscular dystrophy.

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EMPOWER 2011 Video Archive

Watch videos from the EMPOWER 2011 Myotonic Dystrophy Family Conference archive for updates from leading researchers and clinicians.

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Join MDF & Empower Yourself

Join MDF and receive a free Empowerment Pack full of resources designed to empower you and your family.

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MDF Fund-A-Fellow Grants

MDF Awards $400,000 for Research into Treatments for Myotonic Dystrophy.

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Make a Donation, Make a Difference

In 2011, thanks to generous support from the MDF community, the Foundation dramatically expanded our patient and family programs and increased our research fellowships. In 2012, we want and need to do even more.

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Latest News and Events

May 4, 2012
Margaret Bowler Carries the Olympic Torch for Myotonic Dystrophy

When the Olympic Torch blazes across the UK on its way to the London 2012 Olympics, Margaret Bowler, founder and National Coordinator of the Myotonic Dystrophy Support Group (MDSG), will be one of the 8,000 inspirational individuals honored with escorting the flame along its route. Bearing the Olympic Torch is a great tribute for Margaret, whose own journey through life has been devoted to shining light on the needs of people living with myotonic dystrophy.

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April 16, 2012
Board member Ona McConnell takes on Tough Mudder

Belly crawling through knee-deep mud followed by hill-running, rope climbing, electric shocks and fire. Sound like a fun day? For most people the answer would be a resounding “no,” but this is just what MDF board member, Ona McConnell and her Yale field hockey teammates, Maddy Sharp and Jessie Accurso, are looking forward to when they participate in the Tough Mudder Challenge on Sunday, May 13. The women are undertaking what is billed as “the toughest event on the planet” with the goal of raising $5000 for MDF.

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April 4, 2012
2012 MDF Annual Conference

The Myotonic Dystrophy Foundation is pleased to announce our 3rd Myotonic Dystrophy Annual Conference. Building on the success of the 2011 Conference, which over 400 people attended, this year's event gives families and the medical community the opportunity to once again discuss the latest updates on research, and get information about diagnosis, treatment and daily living issues. Registration for the conference is now open.

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March 7, 2012
2012 MDF Annual Conference: Save the Date!

MDF is pleased to announce that our 2012 Myotonic Dystrophy Foundation Annual Conference will take place Friday and Saturday, August 17-18, 2012 in San Francisco, California. Located just minutes from the San Francisco International Airport, this beautiful and accessible area is an ideal place to connect.  

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February 27, 2012
Antisense oligonucleotides make sense in myotonic dystrophy

Antisense oligonucleotides – short segments of genetic material designed to target specific areas of a gene or chromosome – that activated an enzyme to “chew up” toxic RNA (ribonucleic acid) could point the way to a treatment for a degenerative muscle disease called myotonic dystrophy, said researchers from Baylor College of Medicine and Isis Pharmaceuticals, Inc., in a report in the journal Proceedings of the National Academy of Sciences.

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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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