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
Join me, Kevin Alexander, as I share my rare disease story, living with Phenylketonuria (PKU), and the lessons I’ve learned...
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...
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...
About Me
PKU, Newborn Screening, & Rare Disease Advocate
I produced my first PKU short documentary, "My PKU Life", in 2011. Since then I've been traveling the world speaking as a PKU & newborn screening advocate and producing videos about PKU.
