Our first conference was held in July 1999 in Cleveland, Ohio. Since then, we have held a conference every other year, where people from across the US and around the world come together to discuss Nystagmus and socialize. These conferences are designed to bring together both Nystagmites (as we sometimes call ourselves) and those who love us. The idea behind the conference is educate and help our families better understand how we see the world and what’s out there to help us all live life to the fullest.
Our conferences are generally Friday afternoon through Sunday morning. We typically have dinner on Friday evening with a keynote speaker to get things started. The main portion of the conference is held on Saturday to best accommodate those traveling on limited time and resources. . There is always an effort made to have both adult and children’s activities. In past years we have always been able to secure onsite group babysitting services/daycare so parents are able to devote their full attention to the presentations. We hope that we are able to continue to offer this as part of the conference fee. We try to bring together a wide range of professionals to fill our Saturday breakout sessions. These are designed to help educate and inform the young and old, newly diagnosed and veterans, those affected personally and their families and care givers. In addition to the presentations, we try to incorporate time to sightsee and socialize. Our conferences conclude on Sunday morning after breakfast with our biennial members meeting. During our members meeting we gather feedback about the conference and things attendees what to see in the future. We also present our budget and future spending projections. Our member meeting also provides us with the opportunity to fill vacancies on the board of directors as well as any vacated or up for election executive positions.
If you talk to anyone who has attended, this is usually described as a life changing experience. It gives hope to parents who don’t know what is in store for their children and it gives a lot of Nystagmites the chance to meet someone who truly understands their world. Frequently, this is the first time many of us have ever met someone else with Nystagmus. We sincerely hope that you will be able to join us at our next conference. Below you’ll find a list of frequently discussed topic along with some information on previous conventions.
2013 July 12-14 Orlando, Florida
- Medical Experts
- Low Vision Driving
- IEP/504 Plans
- Everyday Life with Nystagmus
- Youth and Adult Discussion Panels
- Experts Across many fields
- Assistive Technology