The International Myotonic Dystrophy Organization began in 1996 when a diagnosis was made of myotonic dystrophy in the Weston family. There was little information available despite an intensive search. The internet was just becoming active but still little information was available. What really was lacking was practical day to day management information. It  was then decided that more information needed to be available to all members of the community.

The website began operation in June of 1997 featuring basic information on Myotonic Dystrophy and began just as a simple one page web. The website was designed with the web development tool Pacific Design . Information continued to be added to the site over the following years.

The site underwent a significant upgrade in July 1999 with the new site operational in August of 1999. The new web development tool was Microsoft FrontPage and new technology was incorporated.

In 2004 we instituted our web-based HTML newsletter as well as the Yahoo groups on Myotonic Dystrophy. We also contracted to provide the website in 13 other languages through machine translation.

The organization was formally incorporated in August of 2000.  The growing needs of the organization especially with the release of the first monthly newsletter in June of 2000 coupled with the growing email, and the need to continue to upgrade the website lead to this formal incorporation. Additionally the organization applied for non-profit tax exempt status at the same time. The IMDO is a US based corporation with a 501 (c) 3 designation which allows for tax deductions of most contributions.

The current President is Richard Weston.
The current executive director is Anny Slazik.

This is a membership organization with all members helping and participating in the organization and receiving the benefits thereof.