A Story From PKU History: “When Are You Going To Treat My Child?”
This is a story from PKU history. It’s about the impact of advocacy and the significant role it plays in...
Rare Disease Day 2024
On February 29, 2024—Rare Disease Day—I appeared on local media to discuss Rare Disease Day. Here is the video of...
Owning Your Rare Disease Story
Owning your rare disease story is about embracing the power of your voice. Your story is your story, your voice...
Your Story Matters
Today I explore the power of sharing your unique experiences and the importance of embracing self-worth. And try to remember...
The Power of Small Decisions
As a storyteller reflecting on a national tragedy, I share a personal journey of growth in my podcast episode “The...
Looking Back, Looking Ahead
Today, I’m reflecting on 2023. But also looking ahead to 2024, and what’s in store for life, advocacy, and my...
People Are Priceless: A Reflection on Grief During the Holidays
This episode is a reflection on grief during the holidays. Sometimes these reflections on life that I share aren’t really...
Dare To Be Different On PKU Awareness Day
This PKU Awareness Day I’m exploring the beauty of uniqueness and the profound impact we can have by daring to...
One Global Community: A Vision for the PKU Community
The PKU community is one global community. That’s something I feel very deeply after the 2023 ESPKU Conference. This final...
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...
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..
