All Resources
Family & Sibling Kits
Our VIP Family & Sibling Kits are designed to support families as they navigate their own emotions, questions, and experiences....
Preparing for Another School Year with Epilepsy: 5 Tips to Make This Your Best Year Yet
In the next few weeks, many of our kids will be heading off to school. This can be a stressful...
Dear Parent: It’s OK to be where you are.
When my daughter received her diagnosis of PCDH19, I fell apart. I had days when I couldn’t get out of...
On Becoming an Epilepsy Advocate
Years ago, when we were just starting on our journey with PCDH19, someone suggested that I work to raise awareness...
Another Year in Holland: Life as a Parent of a Child with PCDH19
The decorations are put away, the ball has dropped, kids are heading back to school and parents around the world...
PCDH19 Moms
Moms of kids with PCDH19 are often fierce advocates, medical managers and public educators. First and foremost though, we are...
Surviving the Hard Days
This week researchers from University California San Francisco and Boston Children’s Hospital released a study based on data from the...
My Daughter With Epilepsy: Reflections From a Father
Sloan Olivia Holland. The name of the girl I knew would be trouble as soon as the doctor told my...
Tiny Miracles
Celebrate the successes; remember that in between all the challenges, there are tiny miracles: The other day at my 5...
Finding Hope: Parenting a Child with Life-threatening Epilepsy
On the first morning of our much-anticipated annual family vacation, my 11-year-old daughter Emily learned that a beloved Disney actor...
A Father’s Day Blessing
First and foremost, before I get started I want to thank the founders of the PCDH19 Alliance for starting this...
Transitioning to Adulthood With PCDH19 Epilepsy
When your child has significant health & support needs, every approaching transition can feel daunting, but the transition to adulthood...
The cure is out there. Help us find it.
Your donation brings us one step closer to a cure for PCDH19 epilepsy.