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...
Recognize Your Limits: A Story About Self-Care
In this episode, I reflect on the importance of recognizing our limits while navigating life’s challenges. I share personal stories...
Be A Healing Presence in the Rare Disease Community
In this episode of Never Give Up, I delve into the impact of being a healing presence in the rare...
“Call Me Bob”: A Story About Dr Robert Guthrie
In my latest episode, “Call Me Bob,” I delve into the life and legacy of Dr. Robert Guthrie, a pioneering...
The Emotional Toll of Rare Disease Advocacy
Explore the emotional toll of rare disease advocacy in this heartfelt blog article. I share personal insights and experiences, highlighting...
Triggered: A Story About PTSD and Emotional Triggers
Explore the raw and personal journey of dealing with PTSD and emotional triggers in this expanded blog article accompanying my...
Lead From The Front: A Leadership Story from World War II
Explore the remarkable leadership lessons drawn from the life of Major Richard Winters, an extraordinary figure from World War II....
Living With A Mission
Sometimes it takes confronting your darkest moments to embrace living with a mission. This is the story about how I...
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...
Life Moves On: A Story of Hope
Explore hope amidst dark circumstances with this episode as we delve into a journey of advocacy and personal past experiences,...
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..