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

August 25, 2010
Yale Field Hockey “Get A Grip” Campaign

Kicking-off the season on September 3rd the Yale Field Hockey team will also be kicking-off their “Get A Grip” campaign to support the Myotonic Dystrophy Foundation (MDF). Motivated by sophomore goalkeeper Ona McConnell’s diagnosis with the disorder, the Bulldogs are dedicating their 2010 season to raising awareness, raising funds and to providing support to Ona and others with this rare disease.

The campaign starts with the season opener against Sacred Heart on Friday, September 3rd at Johnson Field (7:00 p.m.). Yale will be accepting donations for the Myotonic Dystrophy Foundation, the leading global organization whose sole focus is myotonic dystrophy.

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August 18, 2010
MDA Awards Two Research Grants for Myotonic Dystrophy

The Muscular Dystrophy Association (MDA) recently awarded two research grants for work on myotonic dystrophy.

The first grant, given to Dr. Ju Chen and his research team at the University of California San Diego is for work on a protein Cypher which may play a role in myotonic dystrophy. “Since we’ve studied Cypher from the beginning, we’d really like to understand the function of the protein and to know the disease mechanism," Chen said from his California laboratory. To continue his efforts to unravel the role of this mysterious muscle protein in debilitating diseases, Chen has been awarded a new $330,000 research grant by the Muscular Dystrophy Association.

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July 20, 2010
NIH/FDA Meeting on Antisense Oligonucleotide Therapies

We are pleased to announce the upcoming FDA and NIH co-sponsored meeting titled "Antisense Oligonucleotide (AON) Therapies in Neuromuscular Diseases", taking place on the 27th and 28th of September, 2010 in Washington DC, USA.

Given the growing number of AONs entering clinical development for multiple different neuromuscular disorders, the FDA and NIH, in collaboration with the research and advocacy communities, are taking a proactive role in developing and promoting regulatory science for the AONs by providing a forum for neuromuscular disease stakeholders to present the 'state-of-the-science' and exchange information on issues relevant to the AONs.

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July 19, 2010
Run America IV - Raising Awareness for Myotonic Dystrophy

In 2002, Run America was started to support a friend with myotonic dystrophy. This year, on August 7-15, founding MDF board member, Barry Wald, along with 20 friends will ride around Lake Michigan to raise money and awareness for myotonic dystrophy.

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July 19, 2010
Miles for Muscles - Raising Awareness for Myotonic Dystrophy

Mike Hamlin, a one time avid cyclist with myotonic dystrophy, is inspiring folks to join him on this 100 mile ride October 9, 2010 as a part of the annual Sea Gull Century ride. Mike will be participating on this ride on his recumbent trike.

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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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