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Never Give Up: A Rare Disease Podcast Recently I announced my new creative project: “Never Give Up: A Rare Disease […]
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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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Explore a personal narrative of living with PKU, facing mental health challenges, and the journey to regain hope and resilience. […]
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Every year over four million US newborns are screened for genetic and metabolic conditions and hearing loss as part of a process […]
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..
