Review information for Patients With Myotonic Dystrophy

Posted on February 14, 2013 by Richard

So you’ve been touched by Myotonic Dystrophy. You need a lot of information and Help. The Myotonic Dystrophy Foundation is the premier foundation working to advance the cause and help define treatments. They have a great toolkit to help with a broad understanding of the disease.This toolkit is 124 pages long. Its great!

The Muscular Dystrophy Association of the USA is also working hard to cure the disease. Most Myotonic Dystrophy Patients visit the MDA clinics from Time to time. MDA USA funds a lot of research and they have a new in focus information on Myotonic Dystrophy. Focus on Myotonic Dystrophy MDA USA. There are about 30 pages in this compact review of myotonic Dystrophy. A nice review and graphics of the cause and treatments of DM1.

Living with Myotonic Dystrophy – Information for Patients and Families

Posted on February 14, 2013 by Richard

So whats it like living with Myotonic Dystrophy? It’s a highly variable and complex disease so each person’s journey is different. There are some commonalities. A study was done a ways back to see how couples coped with the disease. This study can be helpful for families with the disease, and extended families to help them see the disease and to provide more support. A common theme is that the couple seems to have to find their own way, that there is not one entity that can point them in the right direction. Even family and friends need help and direction in understanding the disease. This article is easier to read than most medical articles.

Click here for Study/Article Living with Myotonic Dystrophy

This study was done in the Netherlands which has produced a lot of good information on Myotonic Dystrophy. This article can be shared with family members.

New Video Resources for Myotonic Dystrophy Patients

Posted on February 10, 2013 by Richard

The Myotonic Dystrophy Foundation (MDF) based in Menlo Park, CA has launched a variety of new video resources for patients and families with myotonic dystrophy. These resources are available free and on the internet. Families have complained about a lack of resources available in easily understood formats. The videos are informative and focus both on medical issues and day to day management of the disease.

The MDF has captured many informative sessions from their many conferences over the years. These sessions were conducted by experts in the field and deliver the best and up to date information to patients. Previously this was only available at the conference. It was difficult for many patients and families to attend the conferences. Now all that information is broadly available on the internet. Click here for access to the video academy.

The other major initiative of MDF is to have a you tube channel. Recently the MDF launched a you tube channel which again has high quality reviewed materials in a video format. Click here for access to the MDF You Tube channel

These resources greatly expand the available information and accessibility for the patient population and caregivers of people with Myotonic Dystrophy.

The Effect of Myotonic Dystrophy on Daily Life

Posted on October 2, 2012 by Richard

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

Continue reading →

Grant Applications Due Today for MDF Fellowships

Posted on September 14, 2012 by Richard

The Myotonic Dystrophy Organization continues its strong support of Research by soliciting applications for fellowship grants. This program helps to encourage budding researchers in the field of myotonic Dystrophy. The grants are due today Sept 14th 2012 at 5PM Pacific time. The following is from the MDF website www.myotonic.org

Grant Applications

Call for Postdoctoral Fellowship Applications

The Myotonic Dystrophy Foundation (MDF) is pleased to announce the 5th annual Fund-A-Fellow program to support innovative research on myotonic dystrophy. On January 1, 2013, MDF will award a number of $100,000 postdoctoral research fellowships, each providing two years of support at $50,000 per fellowship, per year.