First International Norrie Disease Association (NDA) Conference

The first international conference on Norrie disease was organized by the Norrie Disease Association (NDA) and held in August 2009 in Boston, Massachusetts, USA (Venue: Massachusetts General Hospital (MGH), Simches Research Building, 185 Cambridge Street, Boston, MA 02114)

Highlights

Special lectures, panel discussions, genetic counseling, research enrollment, social activities.

Conference Programme

THURSDAY (August 13): Holiday Inn

  • 3:00 PM - 6:00 PM
    Registration, 13th floor
  • 5:00 PM - 7:00PM
    Informal cocktails at the Holiday Inn banquet room, 13th floor
  • Independent evening dinner

FRIDAY (August 14): Simches Research Building, 3rd Floor, MGH, 185 Cambridge St.

  • 7:00 AM - 9:00 AM
    Registration and check-in at Simches Research Building, MGH
  • 8:30 AM
    Conference welcome & introduction (Mike Kosior)
  • 8:45 AM
    Historical overview of Norrie Disease and the NDA
    Professor Katherine Sims, Neurogenetics, MGH
  • 9:00 AM
    Keynote: Neuroplasticity in Sensory Loss (Question/Answer period to follow)
    Professor Lotfi Merabet, BIDMC
  • 9:45 AM
    Break
  • 10:15 AM
    Speech: Current Norrie Disease Research (Question/Answer period to follow)
    Professor Wolfgang Berger, Medical Genetics, University of Zurich
  • 11:15 AM
    Speech: Audiology in Norrie Disease (Question/Answer period to follow)
    Professor Chris Halpin , MEEI
  • 12:00 PM - 1:30 PM
    Boxed lunch (provided at MGH conference center)
  • 1:30 PM
    Speech: Forward-looking Research (Question/Answer period to follow)
    Professor James Gusella, Center for Human Genetics Research, MGH, Harvard
  • 2:30 PM
    Speech: Norrie Disease Expanding Phenotype (Question/Answer period to follow)
    Professor Heidi Rehm, Laboratory for Molecular Medicine, Harvard
  • 3:30 PM
    Norrie Disease Panel (a discussion with adults with Norrie Disease: Bruce Maguire, Mike Kosior, John Miller)
  • 4:30 PM
    Group meetings and workshops (individuals with ND, siblings, parents)
  • 6:00 PM
    Cocktails at the Holiday Inn banquet room, 13th floor
  • 7:00 PM
    Formal conference dinner at the Holiday Inn banquet room

SATURDAY (August 15) Simches Research Building, 3rd floor

Throughout morning:

  • Genetic counseling
  • Blood collection
  • Research
  • 8:45 AM - 10:00 AM
    Motivational Workshop
    Valerie Sandler, Author
  • 10:00 AM
    Break
  • 10:45 AM
    Guide Dogs Workshop
    Kathy Rooney, Guiding Eyes for the Blind
  • 12:00 PM
    Boxed lunch (provided at MGH conference center)
  • 1:30 PM
    Workshop (Education and skills for the Blind)
    Susan Kosior, Rehabilitation Teacher, Virginia Department for the Blind and Vision Impaired
  • 2:30 PM
    Presentation by Humanware Representative
  • 5:00 PM
    Duck Tour, leaves from Holiday Inn front entrance
  • Independent evening dinner

SUNDAY (August 16) Holiday Inn, 13th floor

  • 8:30 AM
    Farewell breakfast
  • 9:00 AM
    Conference evaluations
  • 9:30 AM
    Fundraising, volunteering, and networking opportunities (NDA Board Panel)