This is a story from PKU history. It’s about the impact of advocacy and the significant role it plays in […]
Today I explore the power of sharing your unique experiences and the importance of embracing self-worth. And try to remember […]
This PKU Awareness Day I’m exploring the beauty of uniqueness and the profound impact we can have by daring to […]
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 […]
Traveling with PKU Formula is always a hot topic in the PKU community. In this post, I will share my […]
As a former TV photojournalist and PKU advocate, I’ve experienced both the highs of promoting awareness for a rare disease […]
PKU Advocacy and Finding Your Voice – A personal reflection on the power of telling your story and advocating for […]
Shame and PKU. That’s something we don’t always talk about. Because as a society we tend to avoid discussions about […]
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About Me
PKU, Newborn Screening, & Rare Disease Advocate
I am a storyteller who lives with the rare metabolic disorder Phenylketonuria (PKU). Since 2012, I have traveled internationally sharing my story and encouraging others to share theirs.