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...
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...
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.
