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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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Season 1 of Never Give Up: A Rare Disease Podcast has come to a close. The tenth and final episode […]
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As someone who has battled with a positive sense of self-worth, I share my personal journey in this article. This […]
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Rare disease parents are some of the most dedicated and loving people you will ever meet. As a rare disease […]
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In this article, I reflect on my personal journey of rare disease advocacy and burnout. Join me as I reflect […]
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As someone who has been involved in rare disease advocacy for a long time, I am sharing my journey of […]
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Exploring Life, Mental Health, and Rare Disease Through the Lens of ‘Never Give Up: A Rare Disease Podcast’ It’s been […]
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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 […]
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..
