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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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The rare disease community is a tight-knit group. In the latest episode of Never Give Up: A Rare Disease Podcast […]
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In this brief podcast episode, I reflect on why I signed off every episode of Season 1 with the phrase […]
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In this blog post, I share how music is helping me through a period of reflection and growth. I explore […]
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Finding Beauty in Life’s Challenges… As I wrap up season one of my podcast, Never Give Up: A Rare Disease […]
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Fear is the root of Imposter Syndrome. And it’s something those of us in rare disease advocacy experience. And it’s […]
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In this blog post, I share personal stories and insights about overcoming trauma and embracing life. This is a reflection […]
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In this blog post, I reflect on the power of choices and how they can impact the world. I share […]
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Making healthy choices is an important part of becoming a whole, integrated person. We live in a society that demands […]
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..
