Myotonic Dystrophy Foundation

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. 

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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.

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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.

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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.

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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

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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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In early January 2009, the Myotonic Dystrophy Foundation will offer its first $100,000 awards to two worthy postdoc fellowship applicants planning to conduct research in the United States. The awards will support the advocacy group’s mission of leading and mobilizing efforts to find the best treatment and a cure for this complex disorder that affects approximately 30,000 to 40,000 Americans.  Learn more or Download an application and addendum  

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The Genetic Information Nondiscrimination Act 2008 (GINA) was signed into law by President Bush May 21, 2008.

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MDF Represented at Annual Meeting of Wellstone Centers of Excellence in Muscular Dystrophy at University of Rochester

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