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 […]
Explore the emotional toll of rare disease advocacy in this heartfelt blog article. I share personal insights and experiences, highlighting […]
Explore the raw and personal journey of dealing with PTSD and emotional triggers in this expanded blog article accompanying my […]
Explore the remarkable leadership lessons drawn from the life of Major Richard Winters, an extraordinary figure from World War II. […]
Sometimes it takes confronting your darkest moments to embrace living with a mission. This is the story about how I […]
In this deeply personal episode, I share my struggles with PKU treatment and how it affected my academic and professional […]
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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.