Myotonic Dystrophy (DM), the most common adult onset form of muscular dystrophy is an inherited disorder that may affect many different body systems, including the heart, eyes, brain, G.I. tract, endocrine system and brain. Onset may occur at any age. The clinical symptoms can vary considerably with respect to the types of symptoms presenting and their severity.
Myotonic Dystrophy Canada is a patient support and advocacy organization run by a small group of volunteers and is supported by medical and scientific advisors in Canada who are committed to furthering the understanding of this disorder as well as to the development of effective treatments for it.
Since the discovery of the causative genes for DM1 (1992) and DM2 (1999), there have been significant leaps in the understanding of this disorder. Growing optimism is evident in the international research community as progress continues in the quest for more effective management and a cure through individual research and international collaboration.
The Myotonic Dystrophy Canada website is intended to complement the most current and informative websites created by other patient advocacy organizations and the international medical community on the subject of Myotonic Dystrophy. It will provide a gateway to these other well-respected international resources and highlight Canadian information and resources.
We are a small organization in a very large country, and welcome information, input and help from other Canadians with the skills and motivation to help make a difference.
Please contact us to help make a difference.
DMCanada Announces Meet & Mix Initiatives for 2012
Families affected by Myotonic Dystrophy often cite the isolation of dealing with this disease alone as a serious challenge. Read more.
IDMC-8 and MDF Empower 2011 Family Conference
The 8th Biennial International Dystrophia Myotonica Consortia meeting (IDMC-8) for the international myotonic dystrophy research community will be held in Clearwater, Florida from November 30, 2011 to December 3, 2011. Read more.
Canadian Neuromuscular Disease Registry (CNDR) is launched
Children and adults with Myotonic Dystrophy and other neuromuscular diseases are now able to join the Canadian Neuromuscular Disease Registry (CNDR) in clinics across Canada from Vancouver to Halifax. Read more.