Never, Never, Never Give Up
In this brief podcast episode, I reflect on why I signed off every episode of Season 1 with the phrase...
60 Years of Newborn Screening
I was diagnosed with PKU at 9 days old thanks to newborn screening. Newborn screening saved my life, but I...
Accepting Your Rare Disease Life
Season 1 of Never Give Up: A Rare Disease Podcast has come to a close. The tenth and final episode...
Life is Amazing: Finding Beauty in Life’s Challenges
Finding Beauty in Life’s Challenges… As I wrap up season one of my podcast, Never Give Up: A Rare Disease...
Confronting Imposter Syndrome as a Rare Disease Advocate
Fear is the root of Imposter Syndrome. And it’s something those of us in rare disease advocacy experience. And it’s...
Overcoming Trauma and Embracing Life
In this blog post, I share personal stories and insights about overcoming trauma and embracing life. This is a reflection...
The Power of Choices: Making an Impact on the World
In this blog post, I reflect on the power of choices and how they can impact the world. I share...
Healthy Choices Start Now
Making healthy choices is an important part of becoming a whole, integrated person. We live in a society that demands...
The Healing Power of Friendship
Friendship heals broken hearts. And it’s the best part about engaging in PKU or rare disease advocacy. If you open...
Rare Disease Advocacy and Burnout
In this article, I reflect on my personal journey of rare disease advocacy and burnout. Join me as I reflect...
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..
