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July 31, 2017

Town Hall Meeting On Living with Face Blindness
By Christina Pressl, MD, Rhonda Kost, MD, and Kimberly S. Vasquez, MPH

On December 13th, 2016, more than 150 members of the public gathered in person and virtually to join the first town hall meeting on “Living with Face Blindness” hosted by The Rockefeller University. The meeting’s primary intent was to bring patients, friends, families, doctors, communities, and all other stakeholders together for an evening filled with informative discussion and exchange about face blindness (also known as prosopagnosia).

The gathering was initiated by Dr. Christina Pressl, Clinical Scholar in Dr. Winrich Freiwald’s Laboratory of Neural Systems. Dr. Pressl studies the neuronal underpinnings of face perception in the lab and also conducts clinical research studies involving individuals with face blindness. The program was designed to include both scientific and lay presentations, and to incorporate questions and feedback from patients and other participants.

Supported in part by a Pilot Award to Dr. Pressl from The Rockefeller University Center for Clinical and Translational Science (CCTS), the event was coordinated in close collaboration with the CCTS Community Engagement Core under the guidance of Drs. Rhonda Kost and Jonathan Tobin, the Community Engagement Specialist Kimberly S. Vasquez MPH, and the staff from Clinical Directors Network. Through a live CCTS-supported webcast, the event was accessible to a large virtual audience, including interested individuals from the U.S., Canada, Germany, Austria, and other countries. The webcast was later archived as part of an eLearning library accessed by clinicians from a broad variety of clinical settings. A link to this archive can be found below.

Dr. Freiwald took the audience on a lively and fascinating journey through the history of perception neuroscience up to current developments in the field of vision neuroscience, with an emphasis on face perception research. The next speaker was Dr. Duchaine, an associate professor in the Department of Psychological and Brain Sciences at Dartmouth College, Dr. Duchaine has worked with prosopagnosic individuals for many years at Harvard University. Together with Dr. Ken Nakayama, he developed today’s most widely used test in research for the assessment of face perception abilities - the Cambridge Face Memory Test. This tool has helped many individuals who are troubled by day-to-day face recognition difficulties document their impairment. Dr. Duchaine provided detailed insights into various aspects of prosopagnosia research and the current state of knowledge on the condition. In one form termed developmental prosopagnosia, individuals experience face recognition difficulties from an early age. Another form, known as acquired prosopagnosia occurs when face perception difficulties arise after damage to certain areas of the brain.

Dr. Joe DeGutis, Ph.D., Investigator and Instructor at Harvard Medical School, and Co-director of the Boston Attention and Learning Laboratory, spoke about his studies to improve face recognition skills of face blind individuals.

Dr. Heather Sellers, author of You Don’t Look Like Anyone I Know, and Professor of English Literature at the University of South Florida has shared her life-experience of face blindness through writing and public presentations. As the keynote speaker at the town hall meeting, Dr. Sellers spoke about her struggle to recognize people by their face, and her detective-like efforts to find the causes of her difficulty. Dr. Sellers vividly described the relief she felt when her face recognition challenges were diagnosed as face blindness. In fact, as it turned out, it was Dr. Duchaine who tested Dr. Seller’s and confirmed her inability to recognize other people’s faces. Dr. Sellers said that she hopes that by sharing her story, and through efforts like the town hall meeting, others will find out how to get tested, get the help they seek, and obtain answers to their questions. The evening ended with a panel discussion, during which questions from the on-site and the online audiences were addressed.

If you would like to find out more, please visit http://www.faceweb.me. The recorded, three-hour long webcast video and more information can be found via the websites’ blog page or via the eLearning library. Furthermore, more information about Dr. Pressl’s currently ongoing clinical research studies can be found http://www.faceweb.me.