New Info about the AMO Myotonic Dystrophy Drug

Here is some information from the Muscular Dystrophy Group in the UK about the AMO drug that will be tested in the USA. I may be difficult to read if so click here for the link to the full report and look on page 9-10 https://issuu.com/musculardystrophycampaign/docs/mduk_campaign_april_2019

 

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What causes the Congenital Form of Myotonic Dystrophy

This has always been a puzzle. Most cases of the congenital form of myotonic dystrophy come from the mother having myotonic dystrophy. This recent information has helped with our understanding of this separate disease.

DNA-Methylation-and-Congenital-Myotonic-Dystrophy

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Care recommendations for patients with myotonic dystrophy

Published in 2018 is a consensus based approach for the myotonic dystrophy patient community. This gives general guidelines on how to approach, test and intervene in patients lives to achieve the most optimum outcomes.

Care-recommendations-for-adulats-with-Myotonic-Dystrophy

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Care Recommendations for families with Congential Myotonic Dystrophy

This is a new consensus based article. It was written by 11 experts in the field of myotonic dystrophy and gives a good basic review of how to approach the families that have congenital myotonic dystrophy.

Concensus-based-care-recommendations-for-Congenital-Myotonic-Dystrophy

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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: www.christopherproject.org.

ChristopherProject-Patient-Survey-SAMPLE

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