My name is Eric Vallabh Minikel and I’m on a lifelong quest to develop a treatment or cure for human prion diseases. I originally trained as a city planner at M.I.T. and was working as a software engineer and data analyst in the transportation sector when, in December 2011, I got some bad news. My wife, Sonia Vallabh, tested positive for the mutant D178N cis 129M allele of PRNP, which causes the genetic prion disease that had claimed her mother's life in December 2010. Her mutation is highly penetrant, with a mean age of onset around 50. Sonia and I set out on a quest to re-train ourselves as scientists. We both started taking night classes, found jobs in research labs, began attending conferences, and eventually enrolled as PhD students in Biological and Biomedical Sciences at Harvard Medical School. I am now a PhD candidate in Stuart Schreiber's laboratory at the Broad Institute.
Sonia, I, and some friends started a blog in January 2012, just weeks after getting her genetic diagnosis, as a way to share what we were learning with one another. We named it CureFFI.org, after fatal familial insomnia (FFI), the particular subtype of prion disease with which Sonia's mother had been afflicted (though we now believe that "human prion disease" is the more meaningful areal unit in which to think about our problem). I had no prior training in biology, and used blogging as a way to struggle through trying to understand the molecular basis of our disease. I got lots of things wrong. So if you look at posts from 2012 or even 2013, and think, "this guy doesn't know what he's talking about", it's true — I didn't! Science is hard. But it's less hard if we struggle through it together. I blog partly to organize my own thoughts and record what I'm learning, partly to share what I've learned with the world, and partly to get feedback from people more knowledgeable than myself.