PKU is not solved. That was a key theme at a PKU conference I attended in 2024. In this reflection […]
A Conversation About Rare Disease Storytelling Five creative professionals. Four have PKU. One is a parent to those with PKU. […]
Advocacy is social justice. But sometimes justice fails. So, we fight. This article explores themes from “Why We Fight: A […]
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 […]
Finding your rare disease community can change your life. That’s true of my own life, and it’s true of the […]
Learning to accept your rare disease life means honoring your limits, finding strength in community, and living with courage and […]
As someone who has battled with a positive sense of self-worth, I share my personal journey in this story. Join […]
Rare disease parents are some of the most dedicated and loving people you will ever meet. As a rare disease […]
In this article, I reflect on my personal journey of rare disease advocacy and burnout. Join me as I reflect […]
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About Me
PKU, Newborn Screening, & Rare Disease Advocate
I am a storyteller who lives with the rare metabolic disorder Phenylketonuria (PKU). Since 2012, I have traveled internationally sharing my story and encouraging others to share theirs.