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This is a story from PKU history. It’s about the impact of advocacy and the significant role it plays in […]
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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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Owning your rare disease story is about embracing the power of your voice. Your story is your story, your voice […]
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Today I explore the power of sharing your unique experiences and the importance of embracing self-worth. And try to remember […]
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As a storyteller reflecting on a national tragedy, I share a personal journey of growth in my podcast episode “The […]
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Today, I’m reflecting on 2023. But also looking ahead to 2024, and what’s in store for life, advocacy, and my […]
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This episode is a reflection on grief during the holidays. Sometimes these reflections on life that I share aren’t really […]
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This PKU Awareness Day I’m exploring the beauty of uniqueness and the profound impact we can have by daring to […]
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The PKU community is one global community. That’s something I feel very deeply after the 2023 ESPKU Conference. This final […]
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In my role as a PKU storyteller and advocate, I have to look at things from many perspectives. However, as […]
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..
