Boston 2012

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!

Download the 2012 Conference Summary

The Norrie Disease Association’s Second International Conference was dedicated to Michael Kosior, late vice president of the NDA and founder of the Norrie Yahoo Group. Mike passed away suddenly at his home in Virginia a month prior to the conference.

“I don’t know anyone who had a bigger heart than he had. It was matched by his wisdom and his commitment to the community and to the importance of self-advocacy . . . We hope that we can honor and pay tribute to him through the ongoing work of the NDA, conferences like this, and everything else he supported.” – Dr. Katherine Sims

“All of us who knew Mike and who were inspired by him, or were mentored by him, or were encouraged by him, or were proud to be his friends…we all know that he changed our world. The most powerful way in which we can honor Mike and preserve his legacy is to do what he did: to go out into the world with courage and compassion, and make a difference. The place and time to start doing that is right here and right now.” –NDA President Bruce Maguire

Beginning with this emotional yet inspiring tribute, the second NDA conference far exceeded the bar set by the first. The string of speeches started with a keynote on the drug development process. Other lecture topics included the latest norrin protein research, cochlear implants, assistive technology, sleep cycles, autism, and strategies for changing problematic behavior.

We are making public the audio recording, and in some cases PowerPoint visuals, of many talks during the two-day event via Dropbox. Email [email protected] to request a CD with the synchronized audio and PowerPoint slides. All audio-only files are accessible in the NDA Conference 2012 folder or through the individual hyperlinks in the document below.

Agenda Highlights

  • Historical Overview of Norrie Disease and the NDA
  • Keynote Address: Understanding the Drug Development Process
  • Progress Towards Understanding the Functional Role of Norrin in the Eye and Ear
  • Hearing Augmentation in Norrie Disease
  • Cochlear Implants
  • Adults with Norrie Disease Panel
  • Adaptive Technology
  • Non-24-Hour Sleep Research and Drug Trial
  • Resources for Everyone (Independent Living and Assistive Technology)
  • Understanding Autism in Norrie Disease
  • Positive Strategies for Changing Problematic Behavior
  • Norrie Disease and Sexuality
  • Presentation of the NDA Board