Why I Fundraise For The PCDH19 Alliance

I first met Julie Walters during a 10 day stay in the PICU in 2009, when a nurse told me that another one year old was having similar symptoms. It was Lila’s second cluster and Violet’s first, and my husband Ted and I connected with Julie and Matt to share our stories and fears. Soon after our encounter, Violet was diagnosed with PCDH19 epilepsy, followed by Lila a few years later. By the time we received Lila’s diagnosis, Julie had co-founded the PCDH19 Alliance and was running a non-profit and Facebook group on top of her day job, as well as parenting a special needs child needing frequent hospital stays. I am continually awestruck by her energy, capability and commitment. I learned from J

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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

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