New Video Resources for Myotonic Dystrophy Patients

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.

Help From MDA Clinics

Many people affected with Myotonic Dystrophy get help from the MDA the Muscular Dystrophy Association. They have clinics all around the United States which are accessible to all even those without funds. They can also help with wheelchairs and other resources. They run summer camps for kids which is awesome as well. Here is a video that  a couple that is affected with myotonic dystrophy has made about their experience with MDA

 

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