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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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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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For Katy I produced this short documentary in 2013 to raise awareness of newborn screening. And for the 10-year anniversary […]
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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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In this brief podcast episode, I reflect on why I signed off every episode of Season 1 with the phrase […]
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I was diagnosed with PKU at 9 days old thanks to newborn screening. Newborn screening saved my life, but I […]
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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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Season 1 of Never Give Up: A Rare Disease Podcast has come to a close. The tenth and final episode […]
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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 […]
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..
