Kacie Craig

MEd, Executive Director at The Cute Syndrome Foundation - USA

Kacie Craig, MEd is the Executive Director of The Cute Syndrome Foundation. Her daughter, Stella, was diagnosed with an ultra-rare genetic disorder called SCN8A at five months old and it was then her passion for advocacy was ignited. Craig began volunteering for TCSF in 2018 and joined the foundation’s executive leadership team in 2020. It was in early 2022 that she transitioned from her long standing career in radiography education to a full time advocate. Kacie and Stella have both been featured in epilepsy awareness segments on KMOV Channel 4 News in St. Louis, Missouri and KY3 News in Springfield, Missouri.