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This reflection explores the complexities of grief and resilience in advocacy, and the need for emotional support in the PKU […]
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In this deeply personal episode, I share my struggles with PKU treatment and how it affected my academic and professional […]
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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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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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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 […]
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Finding your rare disease community can change your life. That’s true of my own life, and it’s true of the […]
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Traveling with PKU Formula is always a hot topic in the PKU community. In this post, I will share my […]
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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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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..
