In this deeply personal episode, I share my struggles with PKU treatment and how it affected my academic and professional […]
Explore hope amidst dark circumstances with this episode as we delve into a journey of advocacy and personal past experiences, […]
This is a story from PKU history. It’s about the impact of advocacy and the significant role it plays in […]
On February 29, 2024 I appeared on KTAL and KMSS to discuss Rare Disease Day. Here is video from the […]
Owning your rare disease story is about embracing the power of your voice. Your story is your story, your voice […]
Today I explore the power of sharing your unique experiences and the importance of embracing self-worth. And try to remember […]
As a storyteller reflecting on a national tragedy, I share a personal journey of growth in my podcast episode “The […]
Today, I’m reflecting on 2023. But also looking ahead to 2024, and what’s in store for life, advocacy, and my […]
This episode is a reflection on grief during the holidays. Sometimes these reflections on life that I share aren’t really […]
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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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.