As someone who has been involved in rare disease advocacy for a long time, I am sharing my journey of […]
In this article, I reflect on my personal journey of rare disease advocacy and burnout. Join me as I reflect […]
As someone who has battled with a positive sense of self-worth, I share my personal journey in this article. Join […]
Friendship heals broken hearts. And it’s the best part about engaging in PKU or rare disease advocacy. If you open […]
Making healthy choices is an important part of becoming a whole, integrated person. We live in a society that demands […]
A fallen officer. A survivor. A mother and child saved. Discover how one person’s sacrifice set off a chain reaction, […]
In this blog post, I share personal stories and insights about overcoming trauma and embracing life. This is from an […]
Fear is the root of Imposter Syndrome. And it’s something those of us in rare disease advocacy experience. And it’s […]
Finding Beauty in Life’s Challenges… It’s not always easy. But I’ve found that searching for beauty even in the darkest […]
Learning to accept your rare disease life means honoring your limits, finding strength in community, and living with courage and […]
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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.