The Christopher Project – Myotonic Dystrophy Survey

This is a comprehensive survey of the Myotonic Dystrophy Population. Its very interesting for me personally as my Sons name is Christopher and he was born in the Midwest. Recently the Report was mailed to interested parties and there is a link to the Full report at the very end of the report. I would recommend that you fill out the form and the receive the full report. There are some data summaries and survey samples in this post as well. Over 4,000 surveys were sent out to a randomized group of contacts on patient organization and others mailing list. Over 1000 were returned. Here is some summary information about the report.

The Christopher Project is a collaborative research project between national patient advocacy organizations, healthcare providers, and patients and families in the USA and Canada. It was designed to complement existing research by directly surveying patients and their family members/caregivers about their experience living with myotonic dystrophy.
To accomplish this, a large survey was distributed to patients in the summer of 2014 and a follow-up survey was distributed to family members/caregivers in early 2015. This Data Supplement is a summary of all of the responses to the questions asked on both surveys, presented as ‘frequency tables’ (i.e., how ‘frequently’ each answer appeared).
This Data Supplement is a companion to the main Christopher Project Report to the Myotonic Dystrophy Community, which can be found online at:


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Myotonic Dystrophy Researchers to Gather in San Francisco in Sept 2017

The International Myotonic Dystrophy Consortium  (IDMC-11) will meet in September 5th- 9th of 2017 in San Francisco California. This meeting features a strong scientific program of highly technical information with hundreds of scientists, physicians, and technical advisors. The meeting also features a patient program as well with some information transfer to the patients. Sign up below for more information:

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Review information for Patients With Myotonic Dystrophy

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.

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Living with Myotonic Dystrophy – Information for Patients and Families

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.

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For some families the diagnosis of Myotonic Dystrophy is made via their child who may have some learning disabilities. Myotonic Dystrophy affects learning and makes it more difficult for children to learn certain tasks. For some reason some tasks are more difficult for these children. Here is some additional information on Learning disabilities from the Netherlands

Its  important to begin education at the earliest level. Birth-3 programs are available in the USA. This intensive help will optimize the educational structure for the child. Most children will begin in Special education classes before kindergarten. Because of the child’s ability to imitate, mainstreaming in regular school should be considered. Here is some specific information:

From the MDA USA: Dr. Ed Goldstein MDA Clinic Director Atlanta Georgia

Q: My child is in an integrated kindergarten. Are there any specific strategies for learning that the school should be aware of?

A: The Spectrum of mental development in children with CMD is quite different from that of the general population. In some studies, 2/3 of these children are mentally retarded (MR); meaning that they have a persistent, global delay in their cognitive development. In addition to varying degrees of mental retardation, many CMD have learning disabilities (LD). These are problems in selected areas of mental processing, which interfere with certain aspects of the educational process. Many of the patients that I follow have a component of Attention Deficit Hyperactivity Disorder (ADHD), which is typified by hyperactivity, impulsivity and distractibility. In the absence of significant heart disease, these ADHD symptoms can sometimes be treated with the use of stimulant medications like Ritalin or Dexedrine. Finally CMD patients are described who have elements of Pervasive Development Disorder (PDD) which is characterized by decreased reciprocal social interaction. What I typically recommend for children is the performance of psychometric testing by a developmental psychologist. This is a test of his mental capabilities and will define the elements of MR, LD, ADHD, PDD and provide insight into the nature of some behavioral problems. This type of testing is not inexpensive, often costing $1000 to $2000. However, good Psychometric Testing is the only way that you can gain appropriate insight into the nature of your child’s thought process, thereby permitting you to make informed decisions about school environments, rehabilitative therapies and behavioral interventions. Your local school system may provide this testing for you.

The variability juvenile and congenital forms of the disease will make management of the educational process unique to each child. Some of the important issues to deal with are the behavioral issues that arise.  Things like incontinence, learning disability, speech problems need to be dealt with. We are still searching for more information on these subjects.

More information on education and learning strategies are needed. If you are an educator please write and send information about what you are doing in your classroom!

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