Second International Norrie Disease Association (NDA) Conference
Programme of the Norrie Disease Association Convention, August 9-11, 2012
THURSDAY (August 9)
Holiday Inn, Beacon Hill, 13th floor
3:00 PM - 6:00 PM
Registration
5:00 PM - 7:00 PM
Informal cocktails, independent evening dinner
FRIDAY (August 10)
Simches Research Building, MGH, 3rd Floor, 185 Cambridge St,
adjacent to Holiday Inn
- 7:00 AM
Registration and check-in (through 9am) - 8:30 AM
Conference Welcome Bruce Maguire, President of the Norrie Disease Association Katherine Sims, MD, Professor of Neurology, Harvard Medical School, Director of Neurogenetics Clinic at MGH - 8:45 AM
Historical Overview of Norrie Disease and the NDA - 9:00 AM
Keynote Address: “Understanding the Drug Development Process: New Models of Bioinnovation
Kenneth Kaitin, PhD, Professor and Director of Tufts Center for the Study of Drug Development, Tufts University School of Medicine
9:45 AM BREAK
- 10:15 AM
Progress Towards Understanding the Functional Role of Norrin in the Eye and Ear
Wolfgang Berger, PhD, Professor of Medical Molecular Genetics, University of Zurich, Switzerland - 11:15 AM
Hearing Augmentation in Norrie Disease: Hearing Aids and Cochlear Implants Chris Halpin, PhD, Associate Professor, Harvard Medical School, Audiologist MEEI
12:00 PM Complimentary Pizza Lunch (Simches Conference Center)
- 1:15 PM
Cochlear Implants: Assessment, Procedures, Expectations and Outcomes
Jeanne Fredricksen, Sr. Consumer Outreach Manager for Med-El
2:00 PM BREAK
- 2:30 PM
Norrie Disease: Closing the gap between the Known and the Unknown
Heidi Rehm, PhD, Laboratory for Molecular Medicine, Associate Molecular Geneticist, Harvard Medical School - 3:30 PM
Adult with Norrie Disease Panel Bruce Maguire, John Miller, Rikki Chaplin - 4:30 PM
Introduction to Tactile Finger Spelling Barbara Doyle, MS, Clinical Consultant and Autism Specialist - 5:15 PM
Group Meetings (individuals with ND, siblings, parents)
6:30 PM Complimentary Buffet Dinner (Simches Conference Center) (includes tribute to Michael Kosior)
SATURDAY (August 11)
Simches Research Building, MGH, 3rd Floor, 185 Cambridge St. [adjacent to Holiday Inn]
-
8:45 AM
Genetic counseling, blood collection, and research (through 12pm) - 8:45 AM
Adaptive Technology Today and Tomorrow Barbara Doyle, MS
10:00 AM BREAK
- 10:30 AM
Non-24-Hour Sleep Research and Drug Trial
Annie Gallagher, Outreach Specialist Vanda Pharmaceuticals, Inc. - 11:15 AM
Resources for Everyone Ann Shor, Director of Independent Living and Assistive Technology (Mass Rehab Commission)
12:00 PM Boxed lunch (Simches Conference Center)
- 1:30 PM
Understanding Autism in Norrie Disease
Barbara Doyle, MS 2:45PM BREAK - 3:15 PM
Positive Strategies for Changing Problematic Behavior
Barbara Doyle, MS
or
- Norrie Disease and Sexuality
Beth Stepanczuk, MD Physical Medicine and Rehabilitation Resident at UPMC (Followed by a panel discussion) - 4:45 PM
Presentation of the Board, Acknowledgements, Concluding Remarks - 6:00 PM
Duck Boat Tour of Boston (leaves from Holiday Inn front entrance)
Independent evening dinner