In This Together – A PKU Adult Perspective
In my role as a PKU storyteller and advocate, I have to look at things from many perspectives. However, as...
I'm an adult living with PKU. I'm also a filmmaker, and since 2012 I've been traveling the world as a PKU and newborn screening advocate. I'm a volunteer for the National PKU Alliance, Vice President of the Louisiana Metabolic Disorders Coaltion, and a member of the International Society of Neonatal Screening.
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 I produced this short documentary in 2013 to raise awareness of newborn screening. And for the 10-year anniversary...
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...
In this blog post, I share how music is helping me through a period of reflection and growth. I explore...
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...
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.
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