Why Rare Disease Patient Advocacy Matters
Let’s talk about rare disease patient advocacy. We can use the word “advocacy” so much that it begins to lose...
Remembering Space Shuttle Columbia
In 2003, the world was rocked by the Space Shuttle Columbia disaster, in which the shuttle broke apart upon re-entry...
PKU Advocacy and Burnout
As a TV photojournalist and PKU advocate, I’ve experienced both the highs of promoting awareness for a rare disease and...
Life Is Amazing – Finding Beauty in Life’s Challenges
Life is full of ups and downs, and sometimes the downs can feel overwhelming. But even in the darkest of...
Making an Impact on the World
Every decision we make, no matter how small, has the potential to create a ripple effect that can change the...
PKU Advocacy and Finding Your Voice
PKU Advocacy and Finding Your Voice – A personal reflection on the power of telling your story and advocating for...
The Battle for Self-Worth: Navigating Shame and PKU
In this blog, I share my personal experiences of navigating shame and PKU while exploring topics such as mental health...
Regaining Hope: My Mental Health Story
This is a story about hope. Believing in hope. Losing hope. Regaining hope. It’s about mental health—my mental health. I...
The Story of Newborn Screening
Every year over four million US newborns are screened for genetic and metabolic conditions and hearing loss as part of a process...
An Unexpected Moment of Gratitude
I don’t cry often. But a recent experience while flying home hit me in the chest in a way that...
About Me
PKU, Newborn Screening, & Rare Disease Advocate
I produced my first PKU short documentary, "My PKU Life", in 2011. Since then I've been traveling the world speaking as a PKU & newborn screening advocate and producing videos about PKU.
