As a former TV photojournalist and PKU advocate, I’ve experienced both the highs of promoting awareness for a rare disease […]
Life is full of ups and downs, and sometimes the downs can feel overwhelming. But even in the darkest of […]
Every decision we make, no matter how small, has the potential to create a ripple effect that can change the […]
PKU Advocacy and Finding Your Voice – A personal reflection on the power of telling your story and advocating for […]
Shame and PKU. That’s something we don’t always talk about. Because as a society we tend to avoid discussions about […]
This article is the original version of my PKU mental health journey. Eventually, it inspired the creation of Never Give […]
I don’t cry often. But a recent experience while flying home hit me in the chest in a way that […]
Reflections on PKU, newborn screening, rare disease, and mental health advocacy. That’s what PKU Journal is all about. Hello, I’m […]
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About Me
PKU, Newborn Screening, & Rare Disease Advocate
I am a storyteller who lives with the rare metabolic disorder Phenylketonuria (PKU). Since 2012, I have traveled internationally sharing my story and encouraging others to share theirs.