Welcome to my world!

Welcome to my blog!  I am Danielle Boyce, data engineer, software developer, researcher, and mom of four, including 14-year-old Charlie.  Charlie had a severe form epilepsy called infantile spasms , and now has Lennox-Gastaut syndrome, intellectual and developmental disabilities, and autism.   He has had two brain surgeries to collectively remove much of the right side of his brain.  I also happen to have a Master’s in Public Health with a concentration in epidemiology and a Doctorate in Public Administration.  I am on faculty at three academic institutions and consulted for many other organizations along the way. I also wrote a children’s book called Charlie’s Teacher, which is written from the perspective of a sibling of a child with special needs.  I travel the country speaking to families and neurology professionals about the importance of including the patient and caregiver perspective in everything we do.  My goal is to share high-quality resources and advice that I have collected from a variety of patient communities throughout my personal journey — all with a sense of humor.