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