Rare Disease Day 2024
On February 29, 2024—Rare Disease Day—I appeared on local media to discuss Rare Disease Day. Here is the video of...
“For Katy”: A Film About Newborn Screening
For Katy I produced this short documentary in 2013 to raise awareness of newborn screening. And for the 10-year anniversary...
The Story of Newborn Screening
Every year over four million US newborns are screened for genetic and metabolic conditions and hearing loss as part of a process...
My PKU Life
I produced My PKU Life 2011 and released it on YouTube. In 2023 it was added to The Disorder Channel,...
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..
