Sharon Fontaine is the President and CEO of the Terry Genetic Alliance. It is a non-profit organization that advocates for advancing genomic research.
And, tonight, she shares her Brief But Specular Take on Revolutionary Research.
Sharon Fontaine Terry, President and CEO, Genetic Alliance: When my kids were diagnosed with a rare disease, it felt devastating.
I remember being suddenly thrown into a world I had not chosen. I got scared. And I could not imagine that my two young children would go through all the suffering that could come for them and the loss that we were all about to feel.
When my children were 5 and 7 years old, they were diagnosed with pseudoxanthoma elasticum. And we like to say, PXE means never having pseudoxanthoma elasticum.
The children were diagnosed two days before Christmas. And until two days after Christmas, a research team came and took their blood. And then a few days later, another research group called us and they said, We want to take your kids’ blood. And I said, well, this first group came, you can call them. And they laughed and laughed at us, saying, we do not share. In fact, we are in competition with that group.
And we realized really quickly that there was no partnership going on in biomedical research. And so I thought there must be better ways to do this. There has to be some way we can figure out how sharing can happen.
But I have a masters in religious studies. And so I find myself trapped in a world I didn’t understand or knew. Luckily, we had really good people around us who taught us how to run a prison, how to look for a gene, so that we could eventually find that gene.
And so, in the late 90s, early 2000s, I joined the Genetic Alliance, became CEO shortly thereafter, and expanded and scaled all the tools I had for PXE for all diseases and started construction.
The Genetic Alliance is a coalition of advocacy organizations that care about health and disease that work together to accelerate research. When it comes to data, which seems quite available and easy to share, I began to see that, in fact, this data was coveted, that one institution would not share it with another.
And so to find ways to change the culture of these institutions to allow them to share all this data, it is quite remarkable to see some of our esoteric ideas of data sharing become more popular. People really need to take control of their data, because ultimately people will have to live with this disease. It will ultimately be the people who drive science and research forward.
Today both of my kids are amazing. He is my teacher. They have the manifestations of the disease and continue to progress with it because we have yet to find a treatment or a cure. But they are both working on it in different ways. I also have a granddaughter. Both have beautiful wives. And so our family is truly blessed.
My name is Sharon Fontaine Terry, and this is my brief but brilliant take on revolutionary research.