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’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.