In 2003, the Space Shuttle Columbia broke apart upon re-entry, killing all seven crew members. It was a national tragedy—and […]
As a former TV photojournalist and PKU advocate, I’ve experienced both the highs of promoting awareness for a rare disease […]
Life is full of ups and downs, and sometimes the downs can feel overwhelming. But even in the darkest of […]
Every decision we make, no matter how small, has the potential to create a ripple effect that can change the […]
PKU Advocacy and Finding Your Voice – A personal reflection on the power of telling your story and advocating for […]
Shame and PKU. That’s something we don’t always talk about. Because as a society we tend to avoid discussions about […]
This article is the original version of my PKU mental health journey. Eventually, it inspired the creation of Never Give […]
The story of newborn screening is about a changed generation. In 2013 I produced this video for the Association of […]
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.