All Resources
Developmental Disabilities and Menstruation
Dr. Mary Elizabeth Christian’s daughter, Grace For some, approaching conversations around puberty and menstruation with your child can feel intimidating,...
Because of Elliot: An Adult Sibling’s Reflection on Growing up with a Brother Who Has a Rare Disease
When you are trying to get to know someone new on a deeper level, there are probably a few things...
My First 18 Months as a PCDH19 Dad
What is PCDH19? I remember asking this question over and over when we received the diagnosis for Louie. I always...
Standing by our Sister: The Sibling Impact of PCDH19
We can’t imagine our family’s life without Norah. Norah was diagnosed with PCDH19 Epilepsy at only 9 months old. She...
Supporting Students with PCDH19 Epilepsy: A Guide for Schools and Educators
Learn more about how PCDH19 Epilepsy can affect students in the classroom and how schools can provide individualized support. This...
PCDH19 at School: Guide to IDEA, BIPs & Section 504
Making sure your child or family member with PCDH19 is adequately cared for while at school can seem daunting. Our guide will help you better understand your options for getting support at school...
Love in an Age of Epilepsy: Relationship Help for Parents of Kids with PCDH19
Learn more about an integrated behavioral health care model for children with epilepsy. This session highlights UCSF’s approach to addressing...
Understanding PCDH19 Epilepsy: A Guide from the PCDH19 Alliance
Learn more about the mission and impact of the PCDH19 Alliance—a volunteer-run organization dedicated to supporting families affected by PCDH19...
The cure is out there. Help us find it.
Your donation brings us one step closer to a cure for PCDH19 epilepsy.