I have a philosophy that guides my PKU advocacy—help and move on. This is a reflection on how to stay […]
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. […]
Advocacy is social justice. But sometimes justice fails. So, we fight. This article explores themes from “Why We Fight: A […]
PKU Awareness Month is a time to reflect on why advocacy matters.I wrote this manifesto because it’s something I believe […]
This reflection explores the complexities of grief and resilience in advocacy, and the need for emotional support in the PKU […]
In this deeply personal story, I share my struggles with PKU treatment and how it affected my academic and professional […]
This is a story from PKU history. It’s about the impact of advocacy and the significant role it plays in […]
Today I explore the power of sharing your unique experiences and the importance of embracing self-worth. And try to remember […]
- 1
- 2
Featured Article
Recent Posts – PKU
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.