Prion Disease fucking sucks.

The fact that it’s so insanely rare makes it even worse. Trust me, I know from experience.

When my dad was diagnosed with prion disease, I started googling everything related to it. I created this website to streamline the most accurate and helpful resources on prion disease. Because it's so rare, consistent facts and figures were difficult to find online.

Ironically, even my (totally coincidental) longtime, preexisting fascination with prion disease was minimally helpful when it was my own dad who was diagnosed. I knew interesting facts, but no real practical information to get through it with my sanity intact.

Much of the information available online sensationalizes the various prion diseases and patients as if they're a real life horror story, so I knew just enough to feel more terrified and isolated, than informed or prepared.

Through my father's diagnosis, subsequent illness, and tragically cruel death, my family and I learned the cause of many mysterious deaths in our extended family. We now know that we are one of the 30 families in the world to carry the genetic mutation for Fatal Familial Insomnia (FFI), a genetic prion disease.

My goals here are:

  • To collect and organize information on prion disease, and mitigate the learning experience for others, whether they are patients, caregivers, or simply curious cult followers of this mysterious and unrelenting killer disease. Think of this website as a "Prion Disease for Dummies."

  • To share our journey as we fight for a treatment or cure against prion disease. Science is awesome, and prion researchers are very, very, close to being able to save lives! We believe that our generation will either be the last to die from prion disease, or the first to survive.

With love & solidarity,

x