The PCDH19 Alliance is a registered non-profit by the Internal Revenue Service under Section 501 (c)(3). We are 100% volunteer run. All the funds we raise go directly to funding research, supporting families, raising awareness, and finding a cure.

Copyright 2019 PCDH19 Alliance

926 A #212 Diablo Ave, Novato, CA 94947

EIN: 45-4020102

July 15, 2019

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Remy

Remy was diagnosed with PCDH19 Epilepsy in December of 2014. She recently spent 3 weeks in the ICU due to seizures. She is home and doing great. Despite the 3 week cluster of seizures, Remy remains on track with all of her milestones. Although, her family is still processing her diagnosis, Remy’s family have already  become active PCDH19 Alliance volunteers. While they haven’t written out her story yet, they feel strongly that they want Remy to be included here, and have gifted us with her beautiful smile for now.
Story coming in the future. . .