Reflect on the journey of rare disease advocacy, personal growth, and hope for the future in this episode. One year […]
This episode is a reflection on grief during the holidays. Sometimes these reflections on life that I share aren’t really […]
The rare disease community is a tight-knit group. In the latest episode of Never Give Up: A Rare Disease Podcast […]
In this brief podcast episode, I reflect on why I signed off every episode of Season 1 with the phrase […]
Finding Beauty in Life’s Challenges… It’s not always easy. But I’ve found that searching for beauty even in the darkest […]
Fear is the root of Imposter Syndrome. And it’s something those of us in rare disease advocacy experience. And it’s […]
In this blog post, I share personal stories and insights about overcoming trauma and embracing life. This is from an […]
A fallen officer. A survivor. A mother and child saved. Discover how one person’s sacrifice set off a chain reaction, […]
Making healthy choices is an important part of becoming a whole, integrated person. We live in a society that demands […]
Friendship heals broken hearts. And it’s the best part about engaging in PKU or rare disease advocacy. If you open […]
Featured Article
Recent Posts
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.