Danielle Boyce, MPH

Primary Research Investigator

Danielle Boyce is a researcher and award-winning patient advocate with more than 20 years of professional experience. She holds a Master’s in Public Health with a concentration in epidemiology and will complete her Doctorate in Public Administration in 2020. For thirteen years she has worked as a research data analyst at Johns Hopkins University. She was a member of the FDA expert panel that recommended the approval of Epidiolex, the first CBD-based medication indicated for Dravet syndrome and Lennox-Gastaut Syndrome (LGS). She has authored and co-authored dozens of peer-reviewed journal articles, a children’s book, and writes a popular blog. She is also developing an app that provides resources to families of children with disabilities. She is also a member of the American Academy of Pediatrics’ Task Force on Epilepsy. Danielle lives in Phoenixville, PA, with her husband and four children. Her son, Charlie, had infantile spasms and now LGS. The cause of Charlie’s seizures is still a mystery, but Danielle connected with other parents in the Gould Syndrome community and wants to use her skills to advance the body of scientific knowledge on this condition.

Gould Syndrome Foundation

We are a registered 501(c)3 Nonprofit dedicated to providing hope and help to children and adults with Gould Syndrome; affecting COL4A1 and COL4A2 genes.
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