Myotonic Dystrophy Foundation Announces Launch Of Medical Website And Online Community

Main Category: Muscular Dystrophy / ALS
Also Included In: Neurology / Neuroscience
Article Date: 19 Sep 2008 - 7:00 PDT

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The Myotonic Dystrophy Foundation (MDF), a patient advocacy organization, is excited to announce the launch of its long-awaited website, www.myotonic.com.

It offers expansive information to help affected families understand and cope with this complex, multisystemic disorder. The primary mission of the MDF focuses on education (for families and medical providers), advocacy and research. All disease information on the website has been edited and approved by members of the MDF Medical and Scientific Advisory Committee comprised of American experts in the field of myotonic dystrophy and muscle research. In addition, the MDF has launched a community site, www.community.myotonic.com, where individuals can meet others living with similar challenges and share information.

Myotonic dystrophy is a common form of muscular dystrophy that can appear at any time from birth to old age. It affects approximately 1:8000 people worldwide. Myotonic dystrophy is also a multisystemic disorder affecting not only muscles but also many systems in the body, including the heart, brain, respiratory and endocrine systems and GI tract, among others. It is described as "...the most variable disorder known in medicine," and is commonly misdiagnosed by doctors. Since the gene was identified in the early 1990s, researchers have discovered that the genetic flaw generally enlarges and causes more severe symptoms in subsequent generations at an earlier age. The transmission of a more severe form at an earlier age, called anticipation, indeed renders myotonic dystrophy a genetic time bomb.

The site offers information about the disease, with a more in-depth description for practitioners in the Professionals section; it offers a medical glossary, resources and links, FAQs, multisystemic features, disease mechanism, MDF postdoctoral fellowship awards (awards to be made annually beginning in January, 2009 -- $100,000 over two years for two researchers), family stories, advocacy news, and ways to get involved. The community site enables affected family members to communicate with others traveling the same path.

www.myotonic.com