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Conference Summary
The NDA’s First International Conference featured speeches by leading medical experts; vocational, motivational, and technological presentations; genetic counseling and testing; and specialized workshops for individuals with Norrie Disease, their parents, and their siblings. Participants from all over the world (Switzerland, Israel, England, Canada) and from many US states (Texas, Washington, North Carolina, and Florida) also enjoyed a formal conference dinner and social activities in the Boston metro area. The NDA is very proud of its first major accomplishment and is grateful for the continued support from its membership. We hope that through the multimedia below, you can either relive or experience for the first time some of the most enlightening moments of the 2009 conference. The NDA would like to thank its host, Massachusetts General Hospital, as well as all of the volunteers who helped us run such a successful conference.
Photos
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Speeches and Workshops
FRIDAY (August 14)
- Conference Welcome & Introductions Katherine Sims
“Welcome” audio
- Historical Overview of Norrie Disease and the NDA Professor Katherine Sims, Neurogenetics, MGH
Slideshow for “Norrie Disease: Historical Perspective”
Audio for “Norrie Disease: Historical Perspective”
Slide text for “Norrie Disease: Historical Perspective”
- Keynote: Neuroplasticity in Sensory Loss (with question/answer period) Professor Lotfi Merabet, BIDMC
Slideshow for “Neuroplasticity Following Sensory Loss”
Audio for “Neuroplasticity Following Sensory Loss”
Slide text for “Neuroplasticity Following Sensory Loss”
- Current Norrie Disease Research (with question/answer period) Professor Wolfgang Berger, Medical Genetics, University of Zurich
Slideshow for “Current Norrie Disease Research”
Audio for “Current Norrie Disease Research”
Slide text for “Current Norrie Disease Research”
- Audiology in Norrie Disease (with question/answer period) Professor Chris Halpin, MEEI
Audiology in Norrie Disease: Research and Hearing Aids
Audio for “Audiology in Norrie Disease: Research and Hearing Aids”
Slide text for “Audiology in Norrie Disease: Research and Hearing Aids”
- Forward-looking Research (with question/answer period) Professor James Gusella, Center for Human Genetics Research, MGH, Harvard
Slideshow for “Forward-looking Research: The Potential of New Genetic Technologies”
Audio for “Forward-looking Research: The Potential of New Genetic Technologies”
Slide text for “Forward-looking Research: The Potential of New Genetic Technologies”
- Norrie Disease Panel A discussion with adults with Norrie Disease: Bruce Maguire, Mike Kosior, John Miller
SATURDAY (August 15)
- Motivational Workshop Valerie Sandler, Author
- Guide Dogs Workshop Kathy Rooney, Guiding Eyes for the Blind
- Education and Skills for the Blind Workshop Susan Kosior, Rehabilitation Teacher, Virginia Department for the Blind and Vision Impaired
- Presentation by Humanware Representative