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PXE International 15th Anniversary is this Year!
September 10 - 12, 2010
Bethesda North Marriott Hotel and Conference Center
Bethesda, Maryland
Celebrate 15 years of accelerated research, discoveries and the
path to treatment. Come learn the latest.
Meet new friends, share stories with old ones.
Check out the agenda below - something for everyone.
Overview
FRIDAY, SEPTEMBER 10, 2010
15th Anniversary Gala Celebration
It is hard to believe it is 15 years since founders Patrick and Sharon Terry established PXE International - but the years have resulted in fabulous advances in PXE research, the largest network of PXEers in the world, and a huge repository of clinical data and samples. Join us in a Gala tribute to all who have given PXE International its first 15 years of life! We look forward to the fellowship of celebrating with you and yours!
SATURDAY, SEPTEMBER 11, 2010
Plenary Address
PXE in a nutshell! In this session we will hear basic information to set the stage for the breakout sessions on Saturday and Sunday. There will be ample time for questions!
Workshop Sessions
On Saturday and Sunday, top clinicians and researchers will present the latest information in an easy-to-understand, small group format that allows plenty of time for in-depth discussion. Delve into the areas that concern you most, while taking advantage of one-on-one communication with PXE specialists. Most workshops are offered multiple times - you won't miss topics that are important to you and all your questions can be addressed. You'll find workshop descriptions and registration forms below.
New this year: Don't miss our newest workshops: Dermatologic Surgery and PXE with Sonia Batra, MD, Vascular Manifestations of PXE with Andrea Yancey, MD, and Building a Career without Boundaries with Kate Williams, employment specialist with Adaptive Technology Services. These workshops are also available as webinars this summer.
Back by popular demand: Our popular Low Vision Session, coupled with an individual consult, is a special offering repeated this year. Wendy Mons, a low vision specialist, describes what low vision services can do for you. A limited number of slots are available for an individual, private, one-hour low vision consultation with Wendy, at no cost to you. You must bring particular ophthalmology records (see Free Low Vision Consult section) to the consult, and you must attend the Low Vision Session A2, offered only once at 10:30 on Saturday morning. You must pre-register for the private consultation.
Saturday Evening
Optional Event: Lord of the Rings - Return of the King
Join us Saturday night for an evening of epic adventure with Peter Jackson's Lord of the Rings - Return of the King on a jumbo screen with a symphony orchestra and choristers performing the score live. Enjoy a picnic dinner on the lawn with your fellow conference goers and staff. Experience Wolf Trap National Park for the Performing Arts, a gorgeous amphitheater, as well as good food, wine, and conversation. All while listening to Howard Shore's Oscar-award winning musical score performed onstage by the City Choir of Washington, a live orchestra and soloists. Cost is $60 per person; this event can be chosen and paid for on the registration form. Bus leaves the hotel at approximately 5:30 pm. Event description at wolftrap.org
Otherwise, you are free on Saturday night to enjoy the DC area. The hotel is a block from the clean and efficient DC Metro, ready to take you anywhere in DC. You can be at the National Mall in about 30 minutes. Dinner is on your own; there are enticing restaurants in the vicinity and beyond. There will also be opportunities for informal discussion led by PXEers. Your registration confirmation packet will contain suggestions for DC activities you can do on your own or with others. We will have a message area for you to coordinate activities with others.
Informal Theme Sessions
For those who would like to gather for some informal discussion, we've arranged two peer-to-peer sessions for Saturday evening. Share your stories and voice your concerns. Topics include Lighter Side of Low Vision and General Networking. If you would like to lead an informal session, please indicate that on your registration form.
SUNDAY, SEPTEMBER 12, 2010
Workshops and Closing Session
Workshops continue on Sunday; see the schedule below.
The closing session involves all of us - you will learn about PXE International's vision for the future, and offer input. PXE International's achievements and plans involve all of us! All this and choosing the raffle winners too!
PHOTO/VIDEO RELEASE
PXE International may use and distribute (including, but not limited to, use in newsletters, guides, appeals, web pages, and reports) photographs or videos taken at the PXE International 2010 Biennial Conference. PXE International will distribute a contact list with names and contact information only to PXE International 2010 Biennial Conference attendees. Please contact the PXE International office by email (Mary, mpeck@pxe.org) or by phone (202.362.9599) if you do NOT wish to have your photo, video or contact information used by PXE International as described above.
ATTIRE
Casual, comfortable attire is appropriate for the workshops and plenary sessions. Business or semi-formal attire is recommended for the Friday Night Gala.
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Registration
You may register for the Friday Night Gala only or the entire conference using the online registration form or by downloading a pdf of the registration form and mailing or faxing it to the PXE International office.
Register online:
To register online, click here.
Register by mail or fax:
To register by mail or fax, download Registration Form here.
Please fill out all areas of the registration form completely and clearly. If you need assistance, please call the PXE International office at 202.362.9599, ext. 208. Completed forms can be faxed to 202.966.8553 or mailed to:
PXE International
4301 Connecticut Ave. NW, Suite 404
Washington, DC 20008-2369
Register by phone:
To register by phone for the PXE International 2010 Biennial Conference, Celebrating Discovery, please call the PXE International office at 202.362.9599, ext. 208. We would be happy to assist you.
DEADLINES
Early Bird registration must be postmarked by August 9, 2010. Extended to August 16, 2010
Regular registration must be postmarked by August 30, 2010.
Friday Night Gala Only registration deadline is September 3, 2010.
CANCELLATIONS
If cancellation is necessary, please call PXE International´s office at 202.362.9599, ext. 208.
Cancel by August 27, 2010 for a 100% refund.
Cancel by September 3, 2010 for a 50% refund.
No refund for cancellations made after September 3, 2010.
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15th Anniversary Challenge
PXE International is always bold. We take risks that result in great benefits. Therefore, we are announcing our next and most daring goal so far. We will raise $1,500,000 over the next 5 years. For this we need your help. We need you to make a commitment, a pledge, to support this bold plan. Click here for more information and a pledge form.
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Conference Schedule
Friday, September 10, 2010
| 4:00 PM |
Registration Begins - Lower floor
Open all day, each day |
| 6:15 PM - 7:00 PM |
Reception, Cash bar - Foyer D |
| 7:00 PM - Midnight |
15th Anniversary Gala Dinner and Dancing
PXE International Service Awards: Robin and Joe Maas, Jessica Harper and Tom Rothman
Salon D |
Saturday, September 11, 2010
| 7:30 AM - 5:00 PM |
Registration Continues - Lower floor
Open all day, each day |
| 7:30 AM - 8:30 AM |
Breakfast - Salon D |
| 8:30 AM - 10:00 AM |
Plenary Address - Salon D
Overview of PXE, Lionel Bercovitch
PXE International and Brown University |
| 10:00 AM - 10:30 AM |
Break and Exhibits - Amphitheater Foyer |
| 10:30 AM - 12 Noon |
Session A Workshops - Breakout rooms |
| 12 Noon - 1:30 PM |
Lunch - Salon D
Exhibits near registration |
| 1:30 PM - 3:00 PM |
Session B Workshops - Breakout rooms |
| 3:00 PM - 3:30 PM |
Break and Exhibits - Amphitheater Foyer |
| 3:30 PM - 5:00 PM |
Session C Workshops - Breakout rooms |
| 5:00 PM |
Dinner on own |
| 5:30 PM |
Lord of the Rings - for those who preregistered
Meet by the registration desk |
| 7:30 PM - 10:00 PM |
Lighter Side of Low Vision - Glen Echo
General Networking - Linden Oak |
Sunday, September 12, 2010
| 8:00 AM - 12 Noon |
Registration - Lower level |
| 8:00 AM - 9:00 AM |
Breakfast Buffet - Salon D |
| 9:00 AM - 10:30 AM |
Session D - Breakout rooms |
| 10:30 AM - 11:00 AM |
Break and Exhibits - Amphitheater Foyer |
| 11:00 AM - 12 Noon |
Closing Session, Raffle Results - Salon D |
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Workshop Schedule
Saturday 8:30 am - Plenary Address
Saturday 10:30 am - Workshop Session A
A1 – Genetics of PXE (Brookside A)
A2 – Low Vision Session and private, low vision consults (Forest Glen)
A3 – PXE Research (Linden Oak)
A4 – Women´s Issues (Glen Echo)
Saturday 1:30 pm - Workshop Session B
B1 – Genetics of PXE (Brookside A)
B2 – Dermatologic Surgery and PXE (Oakley)
B3 – PXE and the Eye (Linden Oak)
B4 – Own Your PXE (Glen Echo)
Saturday 3:30 pm - Workshop Session C
C1 – Building a Career without Boundaries (Brookside A)
C2 – Dermatologic Surgery and PXE (Oakley)
C3 – Vascular Manifestations of PXE (Linden Oak)
C4 – General Q & A (Glen Echo)
Saturday 5:30 - Lord of the Rings - Return of the King
Optional event! Cost = $60
Saturday 7:30 pm - Informal Sessions
Lighter Side of Low Vision (Glen Echo)
General Networking (Linden Oak)
Sunday 9:00 am - Workshop Session D
D1 – Building a Career without Boundaries (Brookside A)
D2 – Coping with PXE (Oakley)
D3 – Vascular Manifestations of PXE (Linden Oak)
D4 – US Insurance Issues (Glen Echo)
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Workshop Descriptions and Speaker Bios
Plenary Address
Saturday, 8:30 AM
Overview of PXE: so we all start from the same place.
Presenter: Lionel Bercovitch, MD, PXE International and Brown University
Building a Career without Boundaries
Saturday, Session C1 and Sunday, Session D1
Although all are encouraged to attend, those who are vision-impaired will find special meaning in this presentation. Learn tools and techniques to acquire the RIGHT position. Tailor your cover letter and resume to fit the needs of prospective employers, look into the "hidden" job market, and receive valuable interview tips. Take-away packet included.
Presenter: Kate Williams, Kate Williams Consulting at Adaptive Technology Services
Coping with PXE
Sunday, Session D2
Being diagnosed with PXE can be an overwhelming and difficult experience. Gain perspective and strength as we discuss how to deal with diagnosis and cope productively with uncertainty.
Presenter: Brigid Guttmacher, MA, private practice therapist and grief counselor
Dermatologic Surgery and PXE
Saturday, Sessions B2 and C2
A description of various corrective procedures that will improve or partially correct skin disorders associated with PXE. There will be plenty of time for questions.
Presenter: Sonia Batra, MD, Batra Medical, Surgical and Cosmetic Dermatology
General Networking
Saturday, 7:30 PM, Linden Oak
PXE International provides this space on Saturday night for conference members who would like to informally get together. Please note there is no facilitator for this session.
General Q & A
Saturday, Session C4
Do you have questions about topics and issues not covered in the scheduled sessions? Bring your questions here and Dr. Bercovitch will do his best to answer them.
Presenter: Lionel Bercovitch, MD, Medical Director, PXE International; Professor, Dermatology, Brown University
Presenter: Wai Wong, MD, National Eye Institute, National Institutes of Health
Genetics of PXE
Saturday, Sessions A1 & B1
What are genes? What is a mutation? Is genetic testing right for me? Make sense of it all during this workshop! Basic genetic concepts, important for an appreciation of current PXE research, and a clue to possible treatments will be presented.
Presenter: Tim Hefferon, PhD, National Human Genome Research Institute, NIH
Lighter Side of Low Vision
Saturday, 7:30 PM, Glen Echo
You are probably familiar with the "dark side" to low vision, but there's a lighter side too. Join us for a few laughs!
Presenter: Julia Holman, PXEer
Low Vision Session
Saturday, Session A2
What is low vision? How is it measured and corrected? Why is it beneficial to visit a low vision center? Discuss all of these topics and more with a low vision specialist prepared to review the basics of vision loss and the means to cope. Opportunities are available for an optional, private, one-hour consultation with the presenter later on Saturday or on Sunday. Attendance at Low Vision Session A2 is a requirement for a private consultation. You must bring particular ophthalmology records (see Free Low Vision Consult section below) with you to the consult. Detailed information will be mailed to you with your registration confirmation materials when you register for Session A2 AND a personal consult.
Presenter: Wendy Mons, Founder and President, Mons International, Inc.
Own Your PXE
Saturday, Session B4
Steps to take to help manage your PXE: don´t be controlled or consumed by it.
Presenter: Pat Manson, JD, PXEer and columnist
PXE and the Eye
Saturday, Session B3
Beginning with a description on the anatomy of the eye, Dr. Wong will describe problems caused by PXE. He will also focus on preventive measures and current treatments.
Presenter: Wai Wong, MD, National Eye Institute, National Institutes of Health
PXE Research
Saturday, Session A3
PXE International has a strategic plan for research on PXE – it involves dozens of scientists, the enormous Blood and Tissue Bank, and far-reaching strategies. Pat will describe PXE International´s various research projects.
Presenter: Patrick Terry, President/Research Coordinator, PXE International; Director of Consumer Advocacy, Genomic Health; Advisor, Genetics and Public Policy Center
US Insurance Issues: SSDI and LTD
Sunday, Session D4
Insurance and PXE: disability issues, appealing your claim with your health insurance provider, and more.
Presenter: Pat Manson, JD, PXEer and Columnist
Vascular Manifestations of PXE
Sunday, Sessions C3 and D3
This workshop will discuss the signs and symptoms of vascular disease in PXE. Opportunities for a brief vascular exam will also be available after the discussion.
Presenter: Andrea Yancey, MD, Assistant Professor of Surgery, University of Louisville School of Medicine
Women´s Issues
Saturday, Session A4
Pregnancy, mammograms - women have many concerns about PXE. Dr. Bercovitch will present some of his studies.
Presenter: Lionel Bercovitch, MD, Medical Director, PXE International; Professor, Dermatology, Brown University
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Free, Private Low Vision Consult
Opportunities are available for a free, private, one-hour low vision consultation with low vision specialist Wendy Mons of Mons International during the conference on Saturday afternoon or on Sunday. Attendance at Low Vision Session A2 at 10:30 am on Saturday is a requirement for a private consultation.
What to bring:
You must pre-register for Session A2 and the low vision consult on your registration form, and you must bring the records listed below. Why? First of all, for your protection. Wendy cannot consult with you unless you are seeing an eye doctor. A low vision consultation is intended to pick up where the eye doctor left off. Also, your records will provide the baseline that will fast track you right to the heart of the consult.
Bring a medical eye exam report conducted during the last 6 - 12 months containing:
- all relevant diagnoses
- visual field, if possible
- visual acuity
- if wearing glasses, the current prescription and bifocal add
- if not wearing glasses, the last prescription you wore
Confirmation of your appointment time will be mailed to you prior to the conference. If you have any questions, or there is a particular low vision device you would like to see, please email Terry Mac Dermaid at tmacdermaid@pxe.org.
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Hotel
BETHESDA NORTH MARRIOTT HOTEL and CONFERENCE CENTER
5701 Marinelli Rd.
Bethesda, MD 20852
RATE and RESERVATIONS
Discounted room rate: $145/night
Dates: Friday and Saturday, September 10 and 11, 2010 (available limited days before and after the conference)
Reservation deadline: Thursday, August 19, 2010
Reservations online: http://www.bethesdanorthmarriott.com
Group code (online): PXEPXEA
Reservations by phone: 1 800.228.9290
General information: 1 800.859.8003
You are responsible for making your own hotel reservations. There are a limited number of rooms available on a first come, first served basis for a discounted rate of $145/night.
Mention PXE International during phone registration or enter group code “PXEPXEA” for online registration to receive the discounted room rate. Registering at Bethesda North Marriott without using the PXE International group rate will result in a $40 penalty added to your bill to cover our penalty with the hotel.
DEADLINE
Room reservations should be made by Thursday, August 19, 2010 to guarantee participation in the discounted room rate.
PUBLIC TRANSPORTATION
The hotel is a block from the White Flint station on Washington´s Metrorail system for simple and cost-effective access to the entire DC metro area.
TRANSPORTATION from the AIRPORT
The Bethesda North Marriott is located in a major suburb of Washington, DC – close to excellent dining and shopping, and not far from all the major DC attractions. Reagan National Airport is only 20 miles south of the conference center and Dulles International Airport is 25 miles southwest. The Bethesda North Marriott is accessible by I-495, I-270 and other major arteries. Details for driving directions, Metro, and shuttle services will be included in your confirmation package, and can also be found on the hotel´s website: www.bethesdanorthmarriott.com or by calling the Bethesda North Marriott at 800.859.8003.
PARKING
The Bethesda North Marriott offers onsite parking for meeting attendees at $5.00/day.
ROOMMATES
If you wish to share a room with another attendee, contact the PXE International office by August 12, 2010 at 202.362.9599 or via email: mpeck@pxe.org (Mary). Also be sure to make note on your registration form where roommate requests are designated.
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Costs
Friday Night Gala - $150
Deadline for the Friday Night Gala Only registration is September 3, 2010. Cost for the Friday Night Gala does not apply to those attending the entire conference.
Early Bird Reigstration - $160
Deadline for Early Bird Registration has been extended from August 9 to August 16, 2010. You must be staying at the Bethesda North Marriott under the PXE discounted group rate to qualify for Early Bird registration.
Regular Registration - $220
Deadline for Regular Registration is August 30, 2010. You must be staying at the Bethesda North Marriott under the PXE discounted group rate to qualify for the Regular Registration rate.
On-Site Registration - $270
The cost of on-site registration at the conference is $270 per person.
Lord of the Rings - Return of the King - $60
This is an optional Saturday night event. See description in the Overview section.
Scholarship Fund
Donations to the Scholarship Fund are used to help others attend the PXE International 2010 Biennial Conference. If you would like to apply for a scholarship for the conference, please email us at info@pxe.org. Scholarships are subject to donations received. Deadline for scholarship applications is August 6, 2010. Download Scholarship Application.
PAYMENT TYPE
By Check: Please make checks payable to PXE International, Inc. in U.S. dollars. Mail check and registration form(s) to:
PXE International
4301 Connecticut Ave. NW, Suite 404
Washington, DC 20008-2369
By Credit Card/PayPal: To pay by credit card, please complete the Registration Form online here. By clicking on the PayPal button at the end of the form, you can pay with your credit card. You do not need to have a PayPal account. You will be redirected to the PayPal Payment Gateway for the payment verification.
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Scholarship
Donations to the Scholarship Fund are used to help others attend the PXE International 2010 Biennial Conference. If you would like to apply for a scholarship for the conference, please email us at info@pxe.org. Scholarship awards are subject to donations received. Deadline for scholarship applications is August 6, 2010.
Download Scholarship Application
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Raffle
Consider donating an item to our raffle. If you would like to donate an item, please email Mary, or call the PXE International office at 202.362.9599.
We are delighted to have Kerry Wilson of The Blind Potter (www.blindpotter.com) donating three custom made pottery creations to PXE International for the biennial conference!
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