In this article, I reflect on my personal journey of rare disease advocacy and burnout. Join me as I reflect […]
As someone who has been involved in rare disease advocacy for a long time, I am sharing my journey 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.