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| Achromatopsia Convention 2009 |
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| August 13th-14th |
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| Agenda |
| August 13th |
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| Times/Location | Activity |
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| 9:00 AM- | Shuttle Service from the Hyatt to Chicago Lighthouse will be available starting at 9:00 AM |
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| 9:40 AM-10:00 AM | Registration |
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| 10:00 AM-10:30 AM | Introduction |
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| 10:30 AM-11:00 AM | Tour of the Chicago Lighthouse |
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| 11:00 AM-11:30 AM | Service and Benefits Available To Us |
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| 11:30 AM-12:30 PM | Lunch |
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| 12:30 PM-1:30 PM | Adaptive Technology |
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| 1:30 PM – 2:30 PM Multipurpose Room | Speaker: Kathryn Mack Topic: Topics in Self-Advocacy |
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| 2:30 PM - 4:20 PM Multipurpose Room | Open Floor-Work, School, Social Life Etc. |
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| 4:25PM – 5:20 PM Multipurpose Room | Speaker: Mark Wilkinson Topic: General introduction to achromatopsia physiology, the genetics of achromatopsia, and forthcoming publicly-available genetic testing for achromatopsia |
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| 5:25 PM | Departures |
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| 8:30 PM-9:30 PM Meet in Hyatt Hotel Lobby | Participate in a scientific survey to answer the question: Do achroma-people really see better in the dark than normals? Hosted by Dave Goggin. |
August 14th |
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| Times/Location | Activity |
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| 8:30 AM- | Shuttle Service from the Hyatt to Chicago Lighthouse will be available starting at 8:30 AM |
| 9:10 AM-9:20 AM | Introduction of guest speakers |
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9:20 AM-10:25 AM |
Speaker: William Hauswirth Topic: Introduction to theory of gene therapy, its potential applicability of achromatopsia, caveats and limitations, and possible outcomes |
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| 10:30 AM-11:05 AM | Speaker: Andras Komaromy Topic: Achromatopsia genes and gene therapy research in animal models, lessons learned, and implications for human treatments. |
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11:10AM – 11:40 AM Multipurpose Room |
Speaker: Gene Grindstaff (via video) Topic: Political advocacy for achromatopsia treatment and research funding |
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11:40 AM –12:10 PM Multipurpose Room |
Mainstreaming Communication |
| 12:10 PM – 1:20 PM Multipurpose Room or Cafeteria | Lunch |
| 1:30 PM-2:55 PM Multipurpose Room | Speakers: Sue Washer and Jeff Chulay Topic: Corporate perspectives on developing human achromatopsia gene therapy and thoughts on clinical trials process and planning |
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3:00 PM-3:30 PM Multipurpose Room |
Speaker: TBA Topic: Ongoing research into the physiology and mechanism of achromatopsia, retinal imaging and recording technologies, clinical perspectives |
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3:30 PM - 4:00 PM Multipurpose Room |
Wrap Up Discussion |
| 4:00 PM | Departures |
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14 days left to go
That's right we are now quickly approaching the Achromatopsia Convention!! Hope that everyone has there travel itinerary's squared away and are getting excited!!
The Agenda for August 13th and 14th have been finalized and updated on the website. CLICK HERE to go to the site or view the schedule below.
Adaptive Techniques and Technology
One of the great benefits of getting together will be the pool of adapive techniques and technology brought along. We are consitantly reviewing and advising products over the coarse of our lives. Granted that Achromatopsia varies between each individual, so will assistive devices.Being able to share some of our personal product experiences may help someone else decide whether or not it is worth purchasing for themselves.
One other benefit by sharing what has and hasn't worked you or you child, is bringing what didn't work. We could create an assistive device gifting program directly at the convention of used and/or new devices that may be disliked by you or your child, but would come in great need for another with Achromatopsia.
With this being said I would HIGHLY recommend bringing what you can.Understandable, some things will be difficult to pack and travel. Bring a picture or list of what you do have and would like to donate.
29 Days And Counting
After a year from the first convention and the hard effort put in by the planning committee, we are finally counting down the days till the 2009 Achromatopsia Convention! No longer do we have months of waiting and anticipation; the Achromatopsia Convention is ONLY 29 DAYS AWAY!!!
For those of us that were unable to attend the Achromatopsia Day held at the NFB Convention last year, it will be the first time to physically meet others coping with Achromatopsia. We will be given the chance to be part of the closer connection developed by those whom attended last year, with the hope of building it on an annual basis.
Be sure to check the site on occasion, because some information has been and will be updated. For instance the schedule for the 13th has been added and will provide you with on idea of how the convention will start. As plans are finalized by the committee: the agenda, presenters, and other key factors will be updated on the site. Some updates will also be given right here on the blog.
For those of us that were unable to attend the Achromatopsia Day held at the NFB Convention last year, it will be the first time to physically meet others coping with Achromatopsia. We will be given the chance to be part of the closer connection developed by those whom attended last year, with the hope of building it on an annual basis.
Be sure to check the site on occasion, because some information has been and will be updated. For instance the schedule for the 13th has been added and will provide you with on idea of how the convention will start. As plans are finalized by the committee: the agenda, presenters, and other key factors will be updated on the site. Some updates will also be given right here on the blog.
THE PANEL
As the Achromatopsia Convention nears, we need to get our panel organized. This means GETTING people to be on the panel. If you'd like to be part of the convention, either as a participant of the panel discussion or as a separate presenter, or if you know of someone who would, please let us know. I've included some points we'ld prefer you cover below and you can add anything else you think is relevant.
To apply, please send us the following information:
1. Your name, address, phone so I can contact you.
2. Why do you want to be part of a discussion group or present at the convention?
3. What message do you want to express for the group?
4. What skills do you possess that would make you a goodpresenter?
5. What experience have you had in public speaking? (No experience won't necessarily exclude you.)
6. What is your experience with Achromatopsia that you think might be interesting to others and why?
For those that don't want to be on the panel, we still ask you to give us some major topics that you would like to have discussed. The panel can only guess at what everyone wants to talk about. With your help the panel can arrange a guideline and lead the discussion in an effective manner. We all discuss many topics regarding achromatopsia, such as:
Career Oppurtunities
Dating and Social Interactions
Adaptive Technichs and Technology
Plus much more.
To apply, please send us the following information:
1. Your name, address, phone so I can contact you.
2. Why do you want to be part of a discussion group or present at the convention?
3. What message do you want to express for the group?
4. What skills do you possess that would make you a goodpresenter?
5. What experience have you had in public speaking? (No experience won't necessarily exclude you.)
6. What is your experience with Achromatopsia that you think might be interesting to others and why?
For those that don't want to be on the panel, we still ask you to give us some major topics that you would like to have discussed. The panel can only guess at what everyone wants to talk about. With your help the panel can arrange a guideline and lead the discussion in an effective manner. We all discuss many topics regarding achromatopsia, such as:
Career Oppurtunities
Dating and Social Interactions
Adaptive Technichs and Technology
Plus much more.
Even if you don't plan on attending the convention, please let us know what you would like to be discussed. The committee is trying their hardest to provide recordings of some sort.
