Achromatopsia
'09 Convention
AUGUST 13-15, 2009
This is the 2nd annual convention inviting those with Achromatopsia and all family and friends to meet in Chicago, IL.
Considering the rarity of Achromatopsia (1 in 33,000 in the U.S.), this convention will give many of us a chance to meet others affected by this intriguing condition for the first time.
Although we have been able to connect with each other over the Internet, we are now given the chance to meet each others in person. Meeting can help us to know we are not alone and allow us to create stronger bonds.
Meeting face to face can provide a sense of being and togetherness that we all seem to desire. We can improve understanding and adaption through each other's stories and experiences. Parents can gain a greater understanding of the unique development of their children and will hopefully save them some of the heart ache others have felt.
We will also learn about current research & developments regarding an eventual cure and/or treatment that may help those with Achromatopsia in their personal decision to correct the condition.
Convention Site
The 2009 Achromatopsia Convention will be held at The Chicago Lighthouse for People who are Blind or Visually Impaired.
The Chicago Lighthouse was founded in 1906 by a group of women volunteers, both blind and sighted, working out of the basement of a doctors home offering clothing and food to Chicagoans who were blind, many of them homeless. Since then, the Chicago Lighthouse..... READ MORE
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.
Where to Make your Reservations
Hyatt Regency Chicago
151 East Wacker Drive
(Approx. 4 miles from the Convention Site)
Chicago, Illinois, USA 60601
Tel: 1-800-233-1234
Fax: 1-312-239-4414
$139/night for single or double occupancy
Mention the Achromatopsia Group when you make your reservation
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/
Taxi:
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.
Getting to Chicago
You can fly to either Chicago O'Hare International Airport or Midway Airport.
Chicago O'Hare is about 45 minutes from downtown. ($45 by cab)
Midway Airport is approximately 30 minutes from downtown. ($30 by cab)
For more information on The Chicago Airport Systems, including to and from airport transportation (cab, public transit, etc.), click below.
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
Begin by walkingGo 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 / CermakArrive 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.
For questions and additional infor regarding travel please CONTACT us.
Light House
O'Hare
Midway
Hyatt Hotel
CONVENTION
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HOTEL
TRAVEL INFO
Speakers for the
Achromatopsia Convention 2009
This is going to be a fantastic convention. We'll have booths and a display table, speakers from around the country, genetic sampling (possibly)
Presenters attending will depend on how many participants we get, and how much money is donated.
Click on each possible presenter to learn more about them.
Ed Stone
Convention Topic: latest discoveries in Achromatopsia, genetics, including discussion of status of Carver Lab testing program
Current Projects
Next
Certification
Professional Affiliations
Education
Post Graduate Education
Back
Click Here for source
Andras Komaromy
Convention Topic: the gene therapy research with animal models
Profession
Bill Hauswirth
Convention Topic: prospects and implications for gene therapy in humans and comparative remarks on LCA and other eye diseases.
Research Interests
Current interests involve fundamental basic science and applied clinical aspects of gene expression in the retina. Three areas of focus include:
1. In vitro and in vivo definition of DNA elements regulating photoreceptor cell-specific expression.
2. Development of viral vectors for efficient and specific delivery of genes to the photoreceptor cell in animals.
3. Delivery and testing of potentially therapeutic genes for Retinitis Pigmentosa and Macular Degeneration in natural and transgenic animal models of human disease.
Jim Fulton
Convention Topic: vision science as relates to Achromatopsia, its causes and mechanisms
Credentials
Published Papers
Experience
* 1995- VISION CONCEPTS--Director of Research--Vision systems design, prototyping and verification services
* 1990-1995 Consultant to;
o US State Dept. Agency for International Development
o Russian Ministry of Research, Technology & Education
o Soviet Academy of Science
o PR China Bureau of Foreign Experts
* 1985-89 Hughes Aircraft Co. Asst. Division Manager--Microcircuit manufacturer
* 1983-85 Hughes Optical Products Co--Vice Pres. Eng.--Optics manufacturer
* 1979-85 Hughes Aircraft Co. Laboratory Manager--Optics design
* 1971-79 Grumman Aerospace Co. Program Manager--Imaging satellites
* 1967-71 CBS Laboratories, Inc. Laboratory manager--Vision & Imaging Tech.
Sue Washer
Convention Topic: Gene therapy corporate perspectives I
Sue Washer, President and CEO of AGTC, is an experienced entrepreneur with a strong scientific and operational background. She has a B.S. in biochemistry from Michigan State University and an MBA from the University of Florida where she was one of the first graduates from the Business Schools Entrepreneurship program. Sue has 10 years of pharmaceutical management and research experience from Abbott Labs and Eli Lilly as well as 11 years of senior management experience with entrepreneurial firms in the Gainesville area. Sue successfully raised over $15M for AGTC in their second round of funding in November of 2003.
Jeff Chulay
Convention Topic: Gene therapy corporate perspectives II
Chief Medical Officer and Vice President of Regulatory Affairs Dr. Chulay brings broad medical and regulatory expertise to the Company. He joined AGTC in 2007 from AlphaVax, where as Senior Vice President and Chief Medical Officer he led successful clinical trial programs of recombinant viral vector vaccines for cytomegalovirus and influenza. Prior to joining AlphaVax, Dr. Chulay was a Principal Clinical Program Head in HIV and Opportunistic Infections at GlaxoSmithKline and was responsible for bringing two anti-infective drugs to market. He previously served as Chief of the Department of Immunology at the Walter Reed Army Institute of Research (WRAIR) and Chief of the Virology Division at the U.S. Army Research Institute of Infectious Disease (USAMRIID). Dr. Chulay earned a medical degree from Northwestern University Medical School and a degree in tropical medicine and hygiene from the London School of Hygiene and Tropical Medicine. He served his residency at Cleveland Metropolitan General Hospital and was a fellow in Infectious Disease at WRAIR. He has been a member of the Institute of Medicine Committee on Prevention and Control of Malaria, published 100 papers in peer-reviewed journals and is a reviewer for several leading medical journals.
Kathryn Mack
Convention Topic: Learning how to advocate for yourself
Once a piano teacher, turned horseback riding instructor, turned NASA scientist, turned legal secretary, turned college mathematics instructor, writing has pursued me my entire career. After three children's books, two novels and myrid short stories, I finally understand. Writing is my calling. Though I may be otherwise employed, my real job is to delight and surprise you, my reader. As you explore these pages, I hope you succumb to the vivacity and passion embedded within, for these things are the true foundations of life, and my aim is to share them with you.
www.kathrynmack.com
Gerald Fishman
Convention Topic: clinician perspectives and future imaging studies and other work
Gerald Fishman, MD
Marion Schenk, Esq., Chair of Ophthalmology
Director, Electrophysiology Laboratory
Inherited Retinal Disease Service
UIC Appointments
Recent Publications
Biography
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 I'd prefer you cover below and you can add anything else you think is relevant.
To apply, please send Ellen 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?
Speakers for the Achromatopsia Convention 2009
LIST OF PROBABLE PRESENTERS
(Who comes depends on how many participants we get, and how much money we have)
Ed Stone - latest discoveries in Achromatopsia, genetics, including discussion of status of Carver Lab testing program
Andras Komaromy - the gene therapy research with animal models
Bill Hauswirth - prospects and implications for gene therapy in humans and comparative remarks on LCA and other eye diseases
Jim Fulton - vision science as relates to A., its causes and mechanisms www.sightresearch.net
Sue Washer - AGTC President - Gene therapy corporate perspectives I
Jeff Chulay -AGTC Chief Medical Officer - Gene therapy corporate perspectives II
Gerald Fishman - clinician perspectives and future imaging studies and other work
Kathryn Mack - Learning how to advocate for yourself - http:www.kathrynmack.com.
PRESENTERS
PANEL
Possible Presenters
Panel Members
Coming Soon!
AUGUST 13, 2009 AGENDA
9:00 AM Hyatt Hotel Lobby
Shuttle Service from the Hyatt to Chicago Lighthouse will be available starting at 9:00 AM
9:40 AM-10:00 AM Chicago Lighthouse, Multipurpose Room (Second Floor)
Registration
10:00 AM-10:30 AM Multipurpose Room
Introduction
10:30 AM-11:00 AM Multipurpose Room
Tour of the Chicago Lighthouse
11:00 AM-11:30 AM Multipurpose Room
Service and Benefits Available To Us
11:30 AM-12:30 PM Multipurpose Room or Cafeteria
Lunch
12:30 PM-1:30 PM Multipurpose Room
Adaptive Technology
1:30 PM 2:30 PM Multipurpose Room
Speaker: Kathryn Mack
Topic: Topics in Self-Advocacy
2:30 PM - 4:20 PM Multipurpose Room
Open Floor-Work, School, Social Life Etc.
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
5:25 PM
Departures
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 14, 2009 AGENDA
8:30 AM Hyatt Hotel Lobby
Shuttle Service from the Hyatt to Chicago Lighthouse will be available starting at 8:30 AM
9:10 AM-9:20 AM Multipurpose Room
Introduction of guest speakers
9:20 AM-10:25 AM Multipurpose Room
Speaker: William Hauswirth
Topic: Introduction to theory of gene therapy, its potential applicability of achromatopsia, caveats and limitations, and possible outcomes
10:30 AM-11:05 AM Multipurpose Room
Speaker: Andras Komaromy
Topic: Achromatopsia genes and gene therapy research in animal models, lessons learned, and implications for human treatments.
11:10AM 11:40 AM Multipurpose Room
Speaker: Gene Grindstaff (via video)
Topic: Political advocacy for achromatopsia treatment and research funding
11:40 AM 12:10 PM Multipurpose Room
Mainstreaming Communication
12:10 PM 1:20 PM Multipurpose Room or Cafeteria
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
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
3:30 PM - 4:00 PM Multipurpose Room
Wrap Up Discussion
4:00 PM
Aug. 13th
Aug. 14th
Donate
Register here for the Chicago 2009 Convention!
The convention is just $60 per adult and $30 for anyone under 18. Maximum cost is $150.
If you register before May 1, you'll be entered into a drawing for a FREE night at the hotel. (What a deal!)
So what are you waiting for? Register TODAY!
Here's how to register:
Choose the number of people you want to register
List their names (and ages for children) in the box below.
If you have achromatopsia, please tell us what you do for a living, also
Add registration to your cart
You will be directed to PayPal where you'll be able to choose a credit card to pay
Donations are required to fund the presenters travel expenses. Although they are willing to speak free of charge, they do ask that we pay for any expenses for their service.
Again, depending on the total amount donated and registration inquired, will determine how many presenters will be at the convention.
Please remember that this is a great opportunity for you and others to meet and gain information.
Links
Thank you to all those who've put their time and effort into making this years convention possible.
For those in need of additional information, please use the contact form to the right by clicking the individuals name below.
Achromatopsia Convention Blog
07/15/09 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........READ MORE
07/03/09 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.......READ MORE
06/17/09 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....... READ MORE
06/04/09 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...... READ MORE
06/03/09 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.......READ MORE
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