Looking Back, Looking Ahead
Today, I’m reflecting on 2023. But also looking ahead to 2024, and what’s in store for life, advocacy, and my...
People Are Priceless: A Reflection on Grief During the Holidays
This episode is a reflection on grief during the holidays. Sometimes these reflections on life that I share aren’t really...
When You Never Have To Say Goodbye
The rare disease community is a tight-knit group. In the latest episode of Never Give Up: A Rare Disease Podcast...
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...
My Summer of Sound: Music and Mental Health
In this blog post, I share how music is helping me through a period of reflection and growth. I explore...
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...
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..
