Never Out of the Fight: Grief and Resilience in Advocacy
This reflection explores the complexities of grief and resilience in advocacy, and the need for emotional support in the PKU...
When I Almost Gave Up: My Struggles with PKU Treatment
In this deeply personal episode, I share my struggles with PKU treatment and how it affected my academic and professional...
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...
Your Story Matters
Today I explore the power of sharing your unique experiences and the importance of embracing self-worth. And try to remember...
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...
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...
Traveling with PKU Formula
Traveling with PKU Formula is always a hot topic in the PKU community. In this post, I will share my...
PKU Advocacy and Burnout
As a TV photojournalist and PKU advocate, I’ve experienced both the highs of promoting awareness for a rare disease and...
- 1
- 2
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..
