Communication, as well as other struggles stemming from the condition, can feel like a daunting and almost impossible task for families facing FOXG1. Here, the CoughDrop app – along with other communication products – can be found and used as available resources to improve communication.

FOXG1 Research Foundation Co-founder and mom to Josie, Nicole Johnson, joined America TV to share the most important lessons how she has learned about being an advocate for a medically complex child with an ultra rare disease.