Donate Tissue and Body to Science Myotonic Dystrophy

Many people have asked if they can help with myotonic dystrophy research. I recently became aware of a program where at death you can donate your body to science and they will use tissue samples etc. to further research into myotonic dystrophy. The researchers are always in need of tissue samples and some of these can only be obtained after death.

Although the death of a loved one is devastating the gift of life in research can live on and others can benefit from the donation that is made. Think about this and see if it fits your needs and desires. IF desired fill out the pages and leave with your will.

The Paul and Sheila Wellstone Muscular Dystrophy center in Minneaplois, MN is coordinating this. The hot lines to call are (612)626-0822 and (612) 899-5964 Karac001@umn.edu

Please click here for the forms that are needed.

Biogen / Isis Partnership Readies Autism Drug For Human Clinical Trials

A not well know secondary effect of a drug that Biogen and Isis are jointly developing  may reverse some or all the effects of a specific single gene  type of autism.  This drug will be entering Human Trials in 2014 if all goes well.   In August Biogen and Isis announced a collaboration on a drug that looks extremely promising to treat a form of muscular dystrophy, Myotonic Dystrophy. But it may also reverse the symptoms of autism that occurs in some not well known forms of myotonic dystrophy in children. This could be a sleeper drug that may help with this larger and more pervasive societal problem.

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Cold Weather and Myotonic Dystrophy

COLD WEATHER and MYOTONIC DYSTROPHY

There is no definitive information on cold weather and it’s effects on patients with myotonic dystrophy vary from person to person. Some individuals have reported problems, and here is some information collected from various resources. Its clear that for some individuals there is a mild moderate effect, for others its more severe. If possible plan long term to move to a more temperate climate without harsh winters.

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IDMC-9 in Spain October 2013

IDMC-9 will be the most exciting conference for scientific researchers and the place to be for those associated with myotonic Dystrophy. It looks as though the conference will be at the Kursaal Centre. It is scheduled for October 15-20 2013

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The Effect of Myotonic Dystrophy on Daily Life

This post refers to a study done by Cynthia Gagnon one of the preeminent researchers in myotonic dystrophy. In 2007 a study was published and this post is based on that article. Click here for a full copy of the scientific study ==>Life Habits with Myotonic Dystrophy

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