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*We families have come together to call our children CHARMers. CHARM, or Cerebral/Cognitive, Hypotonia, Anomalies Related to MAPK8IP3. While this name is not a syndrome name or recognized/endorsed by the medical community, it nevertheless serves as a way to describe our children while also recognizing their joyful, charming personalities who bring much sunshine to our lives. We connect via email, on a private Facebook group and over Zoom 3-4 times per year.

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