DSF Parent Ambassador

Erin Frost – NC Southeast

Erin Frost

Erin lives in Apex, North Carolina with her husband, Justin and their daughters, Mia (16) and Hannah (14). Mia started having seizures at 3 months old. Genetic testing was done when she was about 2.5 years old and she was diagnosed with the SCN1A gene mutation. It took a few years to get the diagnosis of Dravet Syndrome.

 Erin was a stay-at-home mom with the girls for many years and had just moved to North Carolina when Mia was a year old. Going through those years without knowing anyone with a child with seizures and not being connected on social media has been a driver for Erin’s determination to spread awareness and help others find a support network.

Erin is currently working full time as a Clinical Research Coordinator at Duke Health. She was also a neurodiagnostic technologist for many years once she entered the work force again. Her experiences with Mia’s condition and being a part of a clinical trial have shaped her career path in ways she never imagined.

 Erin and her family have three dogs and love going to the mountains. Erin enjoys time at home with the family, going to hockey games, watching Hannah perform in the marching band and going to Target any chance she gets.

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