As someone who has been involved in rare disease advocacy for a long time, I am sharing my journey of […]
In this article, I reflect on my personal journey of rare disease advocacy and burnout. Join me as I reflect […]
Friendship heals broken hearts. And it’s the best part about engaging in PKU or rare disease advocacy. If you open […]
Making healthy choices is an important part of becoming a whole, integrated person. We live in a society that demands […]
In this blog post, I reflect on the power of choices and how they can impact the world. I share […]
In this blog post, I share personal stories and insights about overcoming trauma and embracing life. This is a reflection […]
Fear is the root of Imposter Syndrome. And it’s something those of us in rare disease advocacy experience. And it’s […]
Finding Beauty in Life’s Challenges… As I wrap up season one of my podcast, Never Give Up: A Rare Disease […]
Season 1 of Never Give Up: A Rare Disease Podcast has come to a close. The tenth and final episode […]
I was diagnosed with PKU at 9 days old thanks to newborn screening. Newborn screening saved my life, but I […]
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..
