The PKU community is one global community. That’s something I feel very deeply after the 2023 ESPKU Conference. This final […]
In my role as a PKU storyteller and advocate, I have to look at things from many perspectives. However, as […]
Finding your rare disease community can change your life. That’s true of my own life, and it’s true of the […]
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 Newborn screening is a human right. It saves lives. This film, “For Katy” […]
Traveling with PKU Formula is always a hot topic in the PKU community. In this post, I will share my […]
In this brief podcast episode, I reflect on why I signed off every episode of Season 1 with the phrase […]
I was diagnosed with PKU at 9 days old thanks to newborn screening. Newborn screening saved my life, but I […]
Season 1 of Never Give Up: A Rare Disease Podcast has come to a close. The tenth and final episode […]
Finding Beauty in Life’s Challenges… As I wrap up season one of my podcast, Never Give Up: A Rare Disease […]
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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.