My name is Eric Vallabh Minikel and I’m on a lifelong quest to cure 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 fatal familial insomnia (FFI). Her mother had died of FFI in December 2010, and the 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 started taking night classes, founded a non-profit called Prion Alliance, and found jobs in research labs. I now work as a Computational Scientist in the MacArthur Lab, and in fall 2014 I’ll be starting a PhD in Biological and Biomedical Sciences at Harvard Medical School.
Sonia, I, and some friends started CureFFI.org in January 2012, just weeks after getting her genetic diagnosis, as a way to share what we were learning with one another. I’m now the only major contributor, but the blog still strives to embody our goal of sharing knowledge, making science more open and more accessible to everyone.