In this brief podcast episode, I reflect on why I signed off every episode of Season 1 with the phrase […]
The rare disease community is a tight-knit group. In the latest episode of Never Give Up: A Rare Disease Podcast […]
Finding your rare disease community can change your life. That’s true of my own life, and it’s true of the […]
In my role as a PKU storyteller and advocate, I have to look at things from many perspectives. However, as […]
The PKU community is one global community. That’s something I feel very deeply after the 2023 ESPKU Conference. This final […]
This PKU Awareness Day I’m exploring the beauty of uniqueness and the profound impact we can have by daring to […]
This episode is a reflection on grief during the holidays. Sometimes these reflections on life that I share aren’t really […]
Today, I’m reflecting on 2023. But also looking ahead to 2024, and what’s in store for life, advocacy, and my […]
As a storyteller reflecting on a national tragedy, I share a personal journey of growth in my podcast episode “The […]
Today I explore the power of sharing your unique experiences and the importance of embracing self-worth. And try to remember […]
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..
