This article is a reflection on a recent decision affecting newborn screening policy in the United States. Let me be […]
In my latest episode, “Call Me Bob,” I delve into the life and legacy of Dr. Robert Guthrie, a pioneering […]
For Katy Newborn screening is a human right. It saves lives. This film, “For Katy” tells the story of a […]
I was diagnosed with PKU at 9 days old thanks to newborn screening. Newborn screening saved my life, but I […]
Every decision we make, no matter how small, has the potential to create a ripple effect that can change the […]
The story of newborn screening is about a changed generation. In 2013 I produced this video for the Association of […]
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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.