“Science has answers for you.” This was bold and (at the time) rather unwelcome advice from a friend just two days after my wife, Sonia, was diagnosed with a rare genetic disease. We were grieving and just needed friends to listen, not advise. Sonia’s mother had died a year earlier of a mysterious and rapid neurodegenerative disease which we later learned at autopsy had been fatal familial insomnia. Our bad luck was incalculable: perhaps 100 people worldwide have ever had this disease. It is the rarest of the genetic prion diseases, which in turn make up just a small fraction of all prion diseases, which in turn are collectively still 1 in a million.
Yet over the coming days my friend’s words came to occupy all our thoughts. They were the only optimistic words we had heard. It became increasingly clear to us that, just as we had chosen to do genetic testing, unwilling to live our lives in 50/50 uncertainty as to whether Sonia had inherited this disease, we were also unwilling pin our hopes on others to cure the disease. We knew that from here on out, curing fatal familial insomnia would be our life’s work.
This presented something of a problem, as our knowledge of science was laughable. She and I had only just finished going to graduate school — for law and city planning, respectively. At least we were highly motivated and we still had our youth, and our good (if irrelevant) educations. We also had, it became apparent, another very important asset: we live in Cambridge, Massachusetts, the geographic center of what is probably the world’s greatest biotechnology hub. As a lifelong lover of cities, I was reluctant to give up the career in city planning that I had just begun. But in fact, our journey into science has proven to be an inspiring demonstration of what makes cities — and Boston in particular — amazing.
Sonia quit her job a month after we got the bad news, and with our apartment as home base she began taking biology classes at Harvard Extension School (for credit) and at MIT (sitting in, because MIT is amazing and lets you do these things). We rallied our scientist friends — Ph.D. students and post docs at MIT, Tufts, and Harvard Medical School — to come to our apartment once a week for Science Night, where they discussed the literature with us and helped us make sense of it. A couple of months into Sonia’s class, she asked her TA if he knew of any job opportunities for research technicians, however poorly paid or even on a volunteer basis, and he said that a spot had just opened up in his neuroscience lab at Massachusetts General Hospital. Sonia began volunteering the next week and was hired a month later. Each day her routine took her to four consecutive subway stops on the red line: Harvard, Central, Kendall, and Charles/MGH, with not a moment to spare in between.
She came home breathless with excitement every day, brimming over with exciting science facts to share. I got a job crunching genetic data in the same lab a few months later, discovering that the SQL and R programming skills I had picked up in order to write my master’s thesis on bicycle safety were not, after all, useless in the science world. Sonia and I had both taken pay cuts to make this career change, but we found that we could make it work: no cars, no mortgage, and we even sublet our tiny second bedroom. A friend who had worked in Harvard’s legal services clinic helped us file paperwork to start a non-profit research foundation, and a friend who had set up a company website for his start-up in the South Boston Innovation District taught us how to do the same.
From my vantage point here at Mass. General Hospital, I now feel closer to the heart of what makes Boston great than I ever felt as a city planner. You can analyze genetic data anywhere; there is nothing inherently local about what I do now. But the problems I work on are far too hard to puzzle through alone. Here I can peek over my shoulder and see how the analyst next to me does this or that thing. When I don’t understand how a piece of software works I can ask the person who wrote it. I can pop in and visit brilliant scientists down the hall from me to ask a question or pitch an idea. I can go to talks to hear about new research before it’s published. And I know that all this makes me more productive than I could be anywhere else. This is the pulsing cerebral energy of the city, what economists call agglomeration. This is why innovation loves Boston.
We haven’t cured fatal familial insomnia yet, but we won’t stop until we do. Surprisingly to us, we are happier now than we were before all this happened. We are riding a wave of energy and intellectual excitement that I expect to last a lifetime. I am grateful every day for the city that makes it possible.
Post by Eric Minkel. Eric and Sonia are in a Facebook voting competition to win $10,000 for fatal familial insomnia research. Vote for them once day through March 15th here. You can follow their progress on twitter at @prionalliance, on facebook, and at prionalliance.org.