Kathryn Mack, How To Advocate For Yourself
Nine personality types of the Enneagram
One: The Perfectionist
Ones are detail-oriented. they are exacting, and want things to be done right. They act out of sense of duty, sometimes going overboard with their criticism. They are very good at making sure everything goes according to plan.
Two: The Helper
Twos care a lot about making other people happy. They have a tendency to lose themselves in meeting the needs of others. Twos make very attentive friends and like giving jobs such as social work, teaching, and health care.
Three: The Achiever
Threes are the ultimate multitasks. They like to take on a lot of projects at once, sometimes bogging themselves down with too many obligations. Threes make great public figures, such as board members, politicians, and spokespersons.
Four: The Feeler
Emotions run strong for the Four. They tend to care a lot about appearances (how they appear in the eyes of others), are generally self-expressive and/or artistic, and just want to be understood. Fours would rather work in a job that is meaningful to them rather than earn a lot of money.
Five: The Observer
Fives are greedy for information. They devour books, etc., and can become social misfits as they spend all their energy gathering knowledge. They tend to become researchers, professors, or Mad Scientists.
Six: The Skeptic
Sixes may think this whole personality profile is a bunk. Not only do they not want to be put in a box, they don't believe in "boxes" in general. They tend to doubt their own potential while yearning for stability. Fear of failure motivates many actions. Most Americans are Sixes.
Seven: The Epicure
Sevens are spontaneous, fun, happy, and concerned with appearances. They tend to have great senses of humor, are energetic, jovial, and friendly. However, Sevens tend to have a hard time digesting negative emotions.
Eight: The Leader
Eights like to control situations and conversations. They make great managers, are powerhouses for getting things done and decisions made. Eights sometimes neglect details, as they tend to be "big picture" people.
Nine: The Mediator
Nines are easy going and like to go with the flow. They don't complain, but they also don't tend to stand up for themselves enough. Nines are concerned with keeping the peace and like to avoid making waves.
Convention Updates
Hotel:
If you secured a room at the Hyatt Regency please see the contact information below:
Hyatt Regency Chicago
151 E. Wacker Drive
Chicago, IL 60601
1 312 565 1234
http://chicagoregency.hyatt.com/
The entire convention will be at the Chicago Lighthouse. There will be no meetings or events at the Hyatt Regency.
Transportation:
Transportation will be provided free of charge to the Chicago Lighthouse from the Hyatt Regency each morning. You do not need to be a guest at the Hyatt Regency to utilize the shuttle service. YOU MUST SIGN-UP FOR THE SHUTTLE SERVICE. Please contact robcancilla@gmail.com by Friday, August 8th to reserve your place on the shuttle. Limited seating is available and will be reserved on a first come basis. Attendees will be responsible for transportation after the meeting each day.
The Chicago Lighthouse is located at:
1850 West Roosevelt Ave. (corner of West Roosevelt and South Wood)
Chicago IL, 60610
(312) 666-1331
If you are taking public transportation from the Hyatt:
| Begin by walking | | |
| Go to the train stop at Randolph/Wabash (takes about 9 mins, ask concierge or doorman for exact directions to station) | ||
| Arrive at Randolph/Wabash station and take the Pink Line - Direction: 54 / Cermak | ||
| Arrive at the Polk station and exit train. Walk to the Chicago Lighthouse (takes about 5 mins) Exit the station on Polk street and turn left. At the next light take a left on South Wood street and walk straight for two blocks. The Chicago Lighthouse is on the right side of the street and located on the corner of South Wood and West Roosevelt. Total estimated time for this trip is 35 minutes. | ||
If you would like to take public transportation from another location please note that the Chicago Lighthouse is also across the street from the number 12 Roosevelt bus stop (Wood). For directions using the number 12 bus and other public transportation options/questions please visit: http://www.transitchicago.com/
If you are interested in securing taxi service at anytime in Chicago I recommend contacting Flash Cab at 1 (773) 567-1444. They are reliable and you can book your reservation in advance. In most areas of the city you can easily flag a taxi, but it is handy to have this number.
Parking:
The Chicago Lighthouse has a limited number of parking spaces available for reserve. Please contact Rob Cancilla at robcancilla@gmail.com by Friday, August, 7th if you require a parking spot. Spots will be assigned on a first come basis.
Food:
Complimentary coffee and snacks will be available in the mornings in our meeting room at the Chicago Lighthouse. Lunch will also be provided complimentary of the Lighthouse on both days and will consist of sandwiches, salads, drinks and snacks. If you have any dietary restrictions or would prefer an alternative to the lunch menu the Lighthouse has a full service cafeteria. The cafeteria is open for breakfast and lunch. Food purchased in the cafeteria is not complimentary but the prices are very reasonable and low priced. Menus will be available in the meeting room.
Attire:
The attire for the meeting is casual. Please dress comfortably. Please note that the meeting room can become cold throughout the day, so please dress accordingly.
If you have ANY additional questions about the meeting or Chicago please contact me at robcancilla@gmail.com or at (312) 823-9484.
Thank You
Rob Cancilla
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.
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| Achromatopsia Convention 2009 |
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| August 13th |
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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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| 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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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.
The Chicago Lighthouse
"The Chicago Lighthouse is donating it's facility, AV, adaptive
technology, staff and food to the convention. The Chicago Lighthouse
offers over 28 programs that support the visually impaired and blind
so it seemed to be a natural fit for the meeting.
The Chicago Lighthouse is centrally located on the South West side of
Chicago in the heart of the medical district and UIC/Rush campuses and
is conveniently located a few miles from downtown. The Lighthouse
recently celebrated it's 100 anniversary and has been at it's present
location from the start of the organization.", Rob
technology, staff and food to the convention. The Chicago Lighthouse
offers over 28 programs that support the visually impaired and blind
so it seemed to be a natural fit for the meeting.
The Chicago Lighthouse is centrally located on the South West side of
Chicago in the heart of the medical district and UIC/Rush campuses and
is conveniently located a few miles from downtown. The Lighthouse
recently celebrated it's 100 anniversary and has been at it's present
location from the start of the organization.", Rob
To Learn more about the Chicago Lighthouse CLICK HERE
To Cure or not to Cure?
With the rarity of Achromatopsia finding a cure seems impossible! The wonderful thing is that some scientists and their labs have taken interest in Achromatopsia or other vision impairments that may have similar cures.
Now we may have greater knowledge about Achromatopsia than many PHYSICIANS, but very few of us have a deep understanding of scientific terms, definitions, and processes.
Here's where the Achromatopsia Convention will come in handy: Some of the researchers who will be voluntarily speaking will put things in layman's terms. We may not be looking into their career, but having an understanding of what they are doing may help us return the favor.
There has to be a bridge built between those who deal with Achromatopsia on a daily basis and those interested in research and development. Just think, what if researchers are missing a key factor, that is abundantly obvious to those with Achromatopsia; and we have no idea that this information is important.
On the other hand, even if a cure is never found, researchers will have the tools to create useful aids. They just need to hear from us and possibly take samples for advanced testings.
Just think of the greater opportunities both sides will gain through understanding each other.
BLOG PURPOSE
Rather than constantly changing the website and changing the layout, I decided to start a blog for the convention. This way I can easily give updates and anyone can subscribe for immediate notices.
Not only will I be giving out update, I will try to find some interesting things that are linked to the convention. This can be anything form interesting facts about Chicago, introductions of attendees, additional travel information, Q&A's, etc.
If you would like to be a contributer to the blog let me know. Email me at meishamanwaring@yahoo.com
The Achromatopsia Convention Website
The Achromatopsia Convention website was designed to provide everyone with information regarding location, presenters, registration, donations, etc.
CLICK HERE or the picture to view the site.
