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 […]
The PKU community is one global community. That’s something I feel very deeply after the 2023 ESPKU Conference. This final […]
In my role as a PKU storyteller and advocate, I have to look at things from many perspectives. However, as […]
Finding your rare disease community can change your life. That’s true of my own life, and it’s true of the […]
The rare disease community is a tight-knit group. In the latest episode of Never Give Up: A Rare Disease Podcast […]
“For Katy”: A Film About Newborn Screening Newborn screening is a human right. It saves lives. This film, “For Katy” […]
Traveling with PKU Formula is always a hot topic in the PKU community. In this post, I will share my […]
In this brief podcast episode, I reflect on why I signed off every episode of Season 1 with the phrase […]
I was diagnosed with PKU at 9 days old thanks to newborn screening. Newborn screening saved my life, but I […]
Featured Article
Recent Posts
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.