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...
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...
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...
Fear is the root of Imposter Syndrome. And it’s something those of us in rare disease advocacy experience. And it’s...
In this blog post, I share personal stories and insights about overcoming trauma and embracing life. This is a reflection...
In this blog post, I reflect on the power of choices and how they can impact the world. I share...
Making healthy choices is an important part of becoming a whole, integrated person. We live in a society that demands...
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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