Research is a big part of what we are involved in. Scientific knowledge is the stepping stone to understanding this disease.
Cure DM facilitate research in many ways:
* We attend conferences so all the information we share is accurate and correct - and up to date!
* We are on multiple panels and collaborate to publish documents and share info.
* We fund researchers and clinicians directly.
* We take the patients perspective directly to those working on studies and researching this complex condition. We remind them that we are real people, and advocate on behalf of the DM community at every opportunity.
It is vital we continue to learn about Myotonic Dystrophy, particularly congenital onset, and how it affects our children and loved ones. We need to make this information common knowledge, and try to find treatments. Congenital DM is the most severe form of DM1, and is very much under represented.
No two people are affected in the same way, no two children present with the same symptoms.
This page will have updates on research.
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All items and articles are written by individual authors. The opinions expressed are entirely the authors' own, except where clearly indicated. We strongly advise you to speak with a medical professional about all aspects of the condition."