A Conversation About Rare Disease Storytelling Five creative professionals. Four have PKU. One is a parent to those with PKU. […]
Advocacy is social justice. But sometimes justice fails. So, we fight. This article explores themes from “Why We Fight: A […]
PKU Awareness Month is a time to reflect on why advocacy matters.I wrote this manifesto because it’s something I believe […]
What is the newborn screening system? That’s a subject I’ve been thinking about since my previous article, “Newborn Screening is […]
This article is a reflection on a recent decision affecting newborn screening policy in the United States. Let me be […]
This reflection explores the complexities of grief and resilience in advocacy, and the need for emotional support in the PKU […]
In this episode, I reflect on the importance of recognizing our limits while navigating life’s challenges. I share personal stories […]
In this episode of Never Give Up, I delve into the impact of being a healing presence in the rare […]
In my latest episode, “Call Me Bob,” I delve into the life and legacy of Dr. Robert Guthrie, a pioneering […]
The emotional toll of rare disease advocacy is real. Very real. Advocacy is speaking on behalf of another, which means […]
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About Me
PKU, Newborn Screening, & Rare Disease Advocate
I’ve been an advocate for PKU, newborn screening, and rare disease awareness since 2012. My first project was a film called “My PKU Life”, and since then I’ve been traveling around the world speaking about life with this rare disease and producing other media projects about PKU.