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Let’s talk about rare disease patient advocacy. We can use the word “advocacy” so much that it begins to lose […]
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In 2003, the world was rocked by the Space Shuttle Columbia disaster, in which the shuttle broke apart upon re-entry […]
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As a TV photojournalist and PKU advocate, I’ve experienced both the highs of promoting awareness for a rare disease and […]
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Life is full of ups and downs, and sometimes the downs can feel overwhelming. But even in the darkest of […]
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Every decision we make, no matter how small, has the potential to create a ripple effect that can change the […]
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PKU Advocacy and Finding Your Voice – A personal reflection on the power of telling your story and advocating for […]
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In this blog, I share my personal experiences of navigating shame and PKU while exploring topics such as mental health […]
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This is a story about hope. Believing in hope. Losing hope. Regaining hope. It’s about mental health—my mental health. I […]
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I don’t cry often. But a recent experience while flying home hit me in the chest in a way that […]
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I will tell you something about stories… They aren’t just entertainment. Don’t be fooled. They are all we have, you […]
About Me
PKU, Newborn Screening, & Rare Disease Advocate
I produced my first PKU short documentary, "My PKU Life", in 2011. Since then I've been traveling the world speaking as a PKU & newborn screening advocate and producing videos about PKU.
