Announcing Never Give Up: A Rare Disease Podcast
Never Give Up: A Rare Disease Podcast Recently I announced my new creative project: “Never Give Up: A Rare Disease...
Why Rare Disease 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...
Embracing Life’s Dualities: Finding Beauty Amidst Adversity
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...
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
Explore a personal narrative of living with PKU, facing mental health challenges, and the journey to regain hope and resilience....
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...
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..
