On Tuesday, June 14, the White House hosted the United State of Women Summit in Washington, D.C. This historic gathering was designed to raise awareness of the achievements of women, identify key gender equality issues, and “build a roadmap for future policymakers, stakeholders and advocates to continue to expand opportunities for women and girls."
Broad Institute researchers discuss gender equality at United State of Women Summit
The summit features appearances from President Barack Obama, first lady Michelle Obama, Vice President Joe Biden, and two of our own—Sonia Vallabh and her husband Eric Minikel. Vallabh and Minikel are Ph.D. students at Harvard Medical School working in the Broad’s Center for the Science of Therapeutics. The following is a transcript of their remarks:
Sonia: Hi everyone, I'm Sonia Vallabh and this is my husband Eric Minikel. Six years ago, we watched my mother die of a mysterious and exceptionally rapid neurodegenerative disease. About four and a half years ago, we found out that she had died of a genetic prion disease, and I tested positive for having inherited her genetic mutation, meaning I will face the same fate in my forties or fifties. These diseases are always fatal. I'm thirty-two right now, with no symptoms, but even with years of advance notice, today, there is no pill or medical action I can take, to prevent this disease.
Eric: When we received this life-changing news, we were newlyweds. Sonia was a recent law school graduate and I was trained as a city planner. We had no background in biology, but we set about trying to educate ourselves on the science of these diseases. We started attending night school, reading scientific papers, going to conferences, and within months of getting my diagnosis we had left our jobs for new positions in research labs. Four and a half years later, we are PhD students in biology at Harvard Medical School, and we work at the Broad Institute in Cambridge, Massachusetts, where we are researching therapies for Sonia's disease.
In some ways, we've only just run the race to the starting line, and it's anyone's guess whether we'll be successful in time to prevent her disease. But for us to even get where we are today, many traditional barriers had to be broken down.
Sonia: When we were getting started in science, some people told us that patients shouldn't work on their own diseases, but Eric Lander and Stuart Schreiber, founders of the Broad Institute, decided that, in fact, we were uniquely motivated and were the best people to work on our disease. There are various economic and regulatory obstacles to developing drugs for rare disease like mine, but thanks to President Obama, we're now having conversations about Precision Medicine, about how to get the right drug to the right patient, even when those patients are few, and fundamentals like how to do a clinical trial need to be creatively rethought.
Eric: And we also want to talk about another barrier. As much as Sonia and I are on a very unique quest against her disease, we also face one extremely common problem, which is how to balance the demanding work of a scientific career with the desire to have a family. It is a heartbreaking problem nationwide that female scientists -- smart, passionate women who've invested heavily in their own careers, and in whose careers we as a nation have invested by training them -- leave the workforce because they find they can't afford child care for scientist hours on a scientist's salary.
Sonia: Eric and I have always wanted a family, but when we made our career change, at first it wasn't clear whether we could do both. And to be fair, this is still unclear -- but we've decided to try. We're now starting an IVF cycle with pre-implantation genetic diagnosis to try to conceive a healthy child who doesn't have my disease mutation. There are no guarantees that this will work. But part of what's made this leap of faith possible is being based at the Broad, which is working hard to be a leader in supporting parent scientists. The Broad has recently created a child care financial aid program, and has expanded its paid maternity and paternity leave, and it is continuing to innovate in this area. It gives me hope -- for us specifically, but also much more broadly -- to see that one of the world's leading research institutes views supporting families not as a distraction from its mission of doing great science, but as a core enabling piece of that mission.
There's a long and fraught history of barriers to women advancing in science. This is just one barrier, and one example of how the Broad is grappling to usher in a more inclusive future. But we as a nation have a long way to go on this problem. Please take it from us that biomedical research is hard enough without the attrition of brilliant minds on account of their gender or family choices. We all have fragile and miraculous bodies that will need help battling illness sooner or later -- we all stand to benefit from the science that women will do, if we support them to do it.
Thank you, and please keep your fingers crossed for us.
To learn more about Sonia and Eric and their efforts to develop a treatment for prion disease, read coverage in:
- CBS News: Newlyweds become medical researchers to find cure for wife's disease
- Boston Globe: A husband and wife’s race to cure her fatal genetic disease
- BroadIgnite: Eric Minikel and Sonia Vallabh
- The Atlantic: Insomnia that kills
- New Yorker: A Prion love story