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...
When You Never Have To Say Goodbye
The rare disease community is a tight-knit group. In the latest episode of Never Give Up: A Rare Disease Podcast...
The Healing Power of Friendship
Friendship heals broken hearts. And it’s the best part about engaging in PKU or rare disease advocacy. If you open...
The Battle for Self-Worth
As someone who has battled with a positive sense of self-worth, I share my personal journey in this article. This...
To The Moon and Back: A Message to Rare Disease Parents
Rare disease parents are some of the most dedicated and loving people you will ever meet. As a rare disease...
Rare Disease Advocacy and Burnout
In this article, I reflect on my personal journey of rare disease advocacy and burnout. Join me as I reflect...
Regaining Hope: My Journey to Rare Disease Advocacy
As someone who has been involved in rare disease advocacy for a long time, I am excited to share my...
Life, Mental Health, and Rare Disease
Exploring Life, Mental Health, and Rare Disease Through the Lens of ‘Never Give Up: A Rare Disease Podcast’ It’s been...
Announcing Never Give Up: A Rare Disease Podcast
Never Give Up: A Rare Disease Podcast Recently I announced my new creative project: “Never Give Up: A Rare Disease...
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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.
