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...
Accepting Your Rare Disease Life
Season 1 of Never Give Up: A Rare Disease Podcast has come to a close. The tenth and final episode...
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 sharing my journey of...
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...
Why Rare Disease Advocacy Matters
Let’s talk about rare disease patient advocacy. We can use the word “advocacy” so much that it begins to lose...
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..
