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The (NDW), held on the Friday before the annual meeting, introduces the world of neurological disease to the basic scientist, with the expectation that whatever their interest or expertise in the nervous system, they may bring extraordinary new questions, ideas, and even solutions to problems that baffle those in the field. Since the first NDW in 1980, more than 4,000 neuroscientists have been exposed to the latest advances and in-depth study of neurobiology of disease.

The workshops were conceptualized in 1979 by a group of neuroscientists interested in disease-focused research: Edward Kravitz, Alan Pearlman, Dennis Landis, former SfN Councilor Nancy Wexler, and former SfN Secretary Michael Zigmond. “I had been attending disease-related meetings for several years, and I was appalled at the quality of the science,” said Kravitz, who has been on the faculty at Harvard University since 1961. “Seeing patients in the audience was a little bit sad because these folks were hoping there would be good science done about their disease.” Those experiences motivated him to recruit a new generation of scientists into disease-related research.

Inspired by small, disease-focused workshops put on by the Hereditary Disease Foundation, as well as by the strategies of gifted medical educators, the daylong NDW includes presentations by leading experts, panel discussions, patient presentations, and small discussion groups. The workshops were initially funded by seed money from the Hereditary Disease Foundation, the Bay Foundation, Merck, and the Klingenstein Fund. Starting in the third year of the program, the U.S. National Institute of Neurological Disorders and Stroke (NINDS) began funding the workshops and has supported the program ever since.

“The Neurobiology of Disease Workshop exemplifies the type of programmatic partnership that is so important to advancing neuroscience research,” NINDS Director Walter Koroshetz said. “It brings together the state of both the clinical and basic science that underlies a specific disease. The workshop emphasizes not only what is known but also what mysteries remain as impediments to effective treatment.”  

Each workshop focuses on a particular disease area that has achieved a critical mass of new and important information or, occasionally, on a new way of thinking or a new tool that spans several diseases. Current principal investigator Gwenn Garden, a clinician-scientist at University of Washington, stressed that the workshops are meant to be accessible to non-experts in the field, particularly those who are still deciding the future of their research careers. This aim is considered so important that the workshop faculty hone their presentations at a pre-workshop rehearsal every year focused on “getting away from the seminar mentality and into the teaching mentality,” Kravitz said.

Over 35 years, the landscape of neurobiology of disease has changed considerably. Although both Wexler and Kravitz lamented the lack of cures for brain-based diseases and disorders, they cited substantial progress. For example, three years after the first NDW on Huntington’s disease was held in 1980, researchers discovered the first genetic marker for the disease. Ten years after that was the discovery of the huntingtin gene in 1993. Garden commented on the remarkable advances in technology and computing power, such as the speed of genome sequencing, which have opened up entire avenues of research that weren’t possible 35 years ago. Techniques featured prominently in past workshops, including functional imaging, transgenic models, and induced pluripotent stem cells, were all developed after the NDW started.

Those involved with the NDW emphasized the importance of interaction to the success of the workshops. Wexler described how, at larger meetings, sometimes the discussion that happened “during the coffee break [after a talk] was much more interesting and vital than anything in the formal session.” The organizers tried to capture this energy in several ways, including bringing in patients and their families to speak with the scientists at the beginning of every session.

“So many times when you talk to a scientist about why they entered a field, it has to do with some interaction with an actual person,” Garden said. “But in most curricula for neuroscience graduate students, they will never get exposed to a person who has a neurological disease, who can speak to the experience of the disease in a holistic way.” Garden also underscored how personal experience with patients helps scientists develop a more complete understanding of the disease, which in turn improves their research.

Wexler, who is president of the Hereditary Disease Foundation and a professor at Columbia University, agreed that the patients are compelling and that sometimes new insights can emerge from the discussions. “There’s just an incredible interaction between the families and the scientists,” she said. “The scientists will ask the most poignant, pertinent questions of the patients, like, ‘How’s your sleep?’ — that’s how we discovered that people with Huntington’s disease have a sleep deficit.”

The workshop has been so successful that its in-person format has barely changed over 35 years. However, opportunities afforded by the Internet and other technology have allowed the NDW to expand beyond the annual meeting to include recordings of the sessions and follow-up webinars featuring additional exploration of that year’s topic. In looking to the future of the NDW, Garden said she sees incredible value in continuing the in-person workshops but hopes to continue expanding access through the Web for those who lack the resources to attend the meeting.

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