Rare disease advocacy can lead to exhaustion. Discover wisdom learned from first responders and medical professionals on compartmentalization, self-care, and […]
PKU advocates carry a hidden mental health burden. I wrote a joint reflection with ESPKU on why the community must […]
Kevin Alexander and Richard Farquhar, two PKU advocates living on different continents, sit down for an honest conversation on the […]
As a community, we must talk about PKU and mental health. This article is a reflection on the burdens we […]
I’ve been exploring the relationship between rare disease life and mental health for the last few years. I may be […]
I have a philosophy that guides my PKU advocacy—help and move on. This is a reflection on how to stay […]
This reflection explores the complexities of grief and resilience in advocacy, and the need for emotional support in the PKU […]
In this episode, I reflect on the importance of recognizing our limits while navigating life’s challenges. I share personal stories […]
In this episode of Never Give Up, I delve into the impact of being a healing presence in the rare […]
The emotional toll of rare disease advocacy is real. Very real. Advocacy is speaking on behalf of another, which means […]
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About Me
PKU, Newborn Screening, & Rare Disease Advocate
I am a storyteller who lives with the rare metabolic disorder Phenylketonuria (PKU). Since 2012, I have traveled internationally sharing my story and encouraging others to share theirs.