This is my story. This is My PKU Life. A film I produced in 2011. It’s amazing to see the […]
The story of newborn screening is about a changed generation. In 2013 I produced this video for the Association of […]
For Katy Newborn screening is a human right. It saves lives. This film, “For Katy” tells the story of a […]
On February 29, 2024—Rare Disease Day—I appeared on local media to discuss Rare Disease Day. Here is the video 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.