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 group for all of us to join. Being a part of this group has been nothing but support and motivation for both Jennifer and me. Knowing there is a group of people out there going through the same experiences as we are is so beneficial. I don’t know where we would be without the help and support of this group. With that said, I was honored when Julie asked me to share my thoughts on what it is like being a father of a child with PCDH19. Instantly I started thinking about what theme I wanted to present in this opportunity. My first thought was that it is a blessing and not a challenge t

New Treatments – How Much Longer?

After months - maybe even years - of feeling like a hamster on its exercise wheel chasing a solution to your child’s health issues, you are devastated to finally learn that your loved one has a rare disease that is so novel, a cure has yet to be found. To manage the disease and provide your child with a shred of quality of life, you have your child cycle through several different medications, some of which may alleviate a few of their symptoms, but almost none that alleviate all of the symptoms or even the major burden of the disease. Why is that the case? How difficult can it be to find that one medication that could be the ultimate remedy? What does it take to find a new medication to h

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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

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