Sharon Terry is the president and chief executive of the Genetic Alliance in Washington, a position she has held since 2004. The Genetic Alliance comprises more than 600 organizations that advocate on behalf of treatment for specific diseases.
Why is genetic research so important to you?
Both of my children were diagnosed around Christmas 1994 with PXE, a genetic condition known as pseudoxanthoma elasticum. There was little being done on the disease and little support, and I founded PXE International with my husband in 1995.
How did you become involved in the Genetic Alliance?
The Genetic Alliance provided a tremendous amount of help in starting PXE International, including advice on building a board and fundraising. I realized that if I just stayed working with one organization for one specific disease, I wouldn’t meet my goals.
What are your personal goals?
My personal goals now are even different than a few years ago. At first, I wanted to find a treatment for my kids’ disease. Now, my goal is larger, and I want to contribute to accelerating the pace of translating research into services for those who suffer from diseases. But I wouldn’t be involved in advocacy at all if it weren’t for my children.
What discoveries have been made with PXE?
A consortium of 33 laboratories have discovered the gene and have put together a genetic test for the disease. There is no cure, but right now we are looking to find a way to interrupt the process of the disease to slow it down.
What isyour main focus with Genetic Alliance?
We are interested in providing high-quality information that’s accessible to the public, and we also want open access to research publications and discoveries
