Finding Your Rare Disease Community
Finding your rare disease community can change your life. That’s true of my own life, and it’s true of the...
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...
“For Katy”: A Film About Newborn Screening
For Katy I produced this short documentary in 2013 to raise awareness of newborn screening. And for the 10-year anniversary...
Traveling with PKU Formula
Traveling with PKU Formula is always a hot topic in the PKU community. In this post, I will share my...
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...
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...
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...
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..
