Welcome to my blog! I am Danielle Boyce, the founder of Neurology Parent Professionals, a networking group of parent advocates. I am a working mom of three, including a seven-year-old son, Charlie, who had a severe form epilepsy called infantile spasms
, a condition that sometimes leads to Lennox-Gastaut Syndrome
, and has the autism diagnosis. 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 have worked as a Senior Research Data Analyst at Johns Hopkins, Division of Pulmonary and Critical Care Medicine, for more than ten years. 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 caregiver perspective in absolutely every aspect of pediatric neurology. 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. Follow me on Linkedin and Twitter
Do you have a resource or event that you would like me to share? Perhaps a question or concern that you need help solving? Please contact firstname.lastname@example.org and your submission may appear in a future post!