Suzanne D. Vernon, PhD Virologist Suzanne D. Vernon, Ph.D. has dedicated the past 15 years to solving a medical mystery – CFS, a disabling condition that often begins with a sudden flu-like illness, wreaks havoc on nearly every system in the body, yet defies detection using standard medical tests. As a team lead member of the U.S. Centers for Disease Control and Prevention’s CFS research group, Suzanne recruited an eclectic team of molecular biologists and computational biologists to merge data collected in laboratory, clinical and epidemiology studies of CFS. Ultimately Suzanne wanted to work more directly with the real stakeholders in CFS research – people whose lives were directly affected by the illness. She became scientific director of the CFIDS Association of America in 2007 and now she leads the organization’s Research Institute Without Walls, the first initiative focused on identifying disease-modifying treatment for CFS. At the core of the Research Institute Without Walls is the SolveCFS BioBank, an integrated patient registry and sample biorepository. Early in her tenure with the Association, Suzanne recognized that access to well-characterized clinical populations was a barrier to engaging more scientists in the hunt for answers. At the same time, she found individuals living with CFS very eager to participate in research. Through a shared infrastructure provided by Genetic Alliance’s BioBank, she was able to launch the SolveCFS BioBank and enroll 200 patients and 100 matched controls for a major industry study in less than a year. There are now nine studies underway utilizing or expanding BioBank resources. She believes that this kind of patient-centered research approach is a crucial asset in the search for effective treatments. Suzanne is a sought-after speaker at scientific and medical conferences, but one of her favorite venues is speaking and interacting with the patient community. “No one knows CFS better than the patients. I learned more about CFS in my first six months at the Association talking with patients than I had in 10 years at CDC. To me, patients are the solution. That’s why our research program is patient-centric and citizen-powered.” Suzanne has authored more than 80 scientific papers, contributed to book chapters and written dozens of articles for a variety of publications. She has been interviewed for news features in several science magazines including Science, Nature, and Science News and for articles in the Wall Street Journal, New York Times, San Francisco Chronicle, Saturday Evening Post, Smithsonian and “O” magazine. |
