As a community, we must talk about PKU and mental health. This article is a reflection on the burdens we […]
I’ve been exploring the relationship between rare disease life and mental health for the last few years. I may be […]
Who Am I? We all think that from time to time. My answer: I am more than a PKU advocate. […]
I have a philosophy that guides my PKU advocacy—help and move on. This is a reflection on how to stay […]
The newborn screening system is a public health legacy. This is a column from a guest contributor, Dr. Joanne Mei, […]
Newborn Screening Awareness Month is a time to remember that newborn screening saves lives. But also a time to take […]
Newborn screening advocacy matters. It’s a story that we need to keep sharing—that all babies born in the world deserve […]
PKU is not solved. That was a key theme at a PKU conference I attended in 2024. In this reflection […]
A reflection on identity, belonging, and shared experience in the PKU community—and why our common story matters more than ever. […]
A Conversation About Rare Disease Storytelling Five creative professionals. Four have PKU. One is a parent to those with PKU. […]
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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.