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The Christopher Project Report: Report to the Myotonic Dystrophy Community

Last modified: April 2, 2026

In order to better understand their needs, the Christopher Project asked patients with myotonic dystrophy and their family members/caregivers to report directly on their own experiences, from their own perspective, as experts in their own right. This report complements existing research and offers important, new insight into the myotonic dystrophy experience.

Click here to watch the 2022 Ask-the-Expert webinar featuring key findings from the Christopher Project.