As someone who has been involved in rare disease advocacy for a long time, I am sharing my journey of […]
Let’s talk about rare disease patient advocacy. We can use the word “advocacy” so much that it begins to lose […]
In 2003, the Space Shuttle Columbia broke apart upon re-entry, killing all seven crew members. It was a national tragedy—and […]
As a former TV photojournalist and PKU advocate, I’ve experienced both the highs of promoting awareness for a rare disease […]
Life is full of ups and downs, and sometimes the downs can feel overwhelming. But even in the darkest of […]
Every decision we make, no matter how small, has the potential to create a ripple effect that can change the […]
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 […]
This article is the original version of my PKU mental health journey. Eventually, it inspired the creation of Never Give […]
The story of newborn screening is about a changed generation. In 2013 I produced this video for the Association of […]
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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.