Newly diagnosed with DM
We're here to help you make sense of a new diagnosis, find support, and take meaningful next steps.
New to the DM Community?
If you are looking at this site, you or one of your family members has likely recently received a diagnosis of myotonic dystrophy (DM). This news can be overwhelming, and it may take some time for you and your family to adjust. We hope this site will help you navigate the path of myotonic dystrophy; our goal is to provide you with accurate information about DM and share the experiences of other people who are living with this disorder.
Note: Medical information available on this site is designed as general information only. Consult with a physician or other qualified medical professionals for advice on medical treatment.
Our MDF Toolkit offers an in depth overview of the disease, the genetics behind it, symptoms, and care guidelines. This guide was designed so community members can refer to it as needed to get big picture overviews on a range of topics related to DM.
Resources (Toolkit & publications)
Downloadable and online resources for newly-diagnosed families, those living with DM, and healthcare professionals.
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Learning more about DM
Learn more about each type of DM by visiting the links below:
Hear from families living with myotonic dystrophy
Hear the stories of families living with myotonic dystrophy, where resilience shines through every challenge, offering inspiration and connection to others on the same path.
Additional support
MDF offers a variety of support and programs designed to support those living with myotonic dystrophy (DM), their families, caregivers, and clinicians. While new discoveries about DM and potential treatments continue to emerge, the condition is still not widely understood within the broader medical community. Accessing reliable information can help you better understand your diagnosis, have informed conversations with your healthcare providers, and educate those around you.
Staffed phone support for individuals needing a caring listener or information about resources and advice on living with DM.
Connect with others who understand life with myotonic dystrophy through peer-led support groups.
Learn about research opportunities and ways to contribute to progress in myotonic dystrophy care.
