A Brief But Spectacular take on revolutionizing research

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• Judy Woodruff:

  Sharon Fontaine Terry is the president and CEO of Genetic Alliance. It's a nonprofit that advocates for advancing genomic research.

  And, tonight, she shares her Brief But Spectacular take on revolutionizing research.

  Sharon Fontaine Terry, President and CEO, Genetic Alliance: When my children were diagnosed with a rare disease, it felt devastating.

  I remember feeling all of a sudden thrown into a world that I didn't choose. I was terrified. And I couldn't imagine having my two little kids be subjected to all the suffering that might come for them and for the loss that we were all going to feel.

  When my children were 5 years old and 7 years old, they were diagnosed with pseudoxanthoma elasticum. And we like to say, PXE means never having to pseudoxanthoma elasticum.

  The kids were diagnosed two days before Christmas. And by two days after Christmas, a research group came and took their blood. And then a couple days later, another research group called us and they said, we want to come and take your kids' blood. And I said, well, this first group came, you can call them up. And they laughed and laughed at us, saying, we don't share. In fact, we're in competition with that group.

  And we realized really quickly that there was no sharing going on in biomedical research. And so I thought there must be better ways to do this. There must be some way that we could figure out how sharing could happen.

  But I have a master's in religious studies. And so I find myself thrust into a world I didn't understand or know. Fortunately, we had really good people around us who taught us how to run a gel, how to look for a gene, so that we could eventually, in fact, find that gene.

  And so, in the late 90s, early 2000s, I joined Genetic Alliance, became the CEO shortly thereafter, and started to expand and scale and build all the tools I had know for PXE for all diseases.

  Genetic Alliance is a coalition of advocacy organizations that care about health and disease that work together to try to accelerate research. When it came to data, which should seem to be quite available and easy to share, I started to see that, in fact, this data was coveted, that one institution would not share it with another.

  And so finding ways to change the culture of these institutions to allow that they should be sharing all this data, it's been quite remarkable to see this somewhat esoteric idea of ours of sharing data become more popular. People really need to be in control of their data, because it's ultimately people that will have to live with the disease. It will be ultimately people that will do the driving of science and research.

  Today, both of my children are amazing. They're my teachers. They have the manifestations of the disease and continue to progress with it because we haven't found a treatment or therapy yet. But they're both working on that in different ways. I also have a granddaughter. They both have beautiful wives. And so our family has really been blessed.

  My name is Sharon Fontaine Terry, and this is my Brief But Spectacular take on revolutionizing research.

• Judy Woodruff:

  So wonderful to hear that.

  And you can watch more Brief But Spectacular videos online at PBS.org/NewsHour/Brief.