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...
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..
