2012 Biennial Conference

 2012 Biennial Conference logo

Join PXEers, their families, healthcare providers and researchers in a fabulous experience! Come learn the latest. Meet new friends, and share stories with old ones. Check out the agenda – something for everyone! All of this will take place in the suburbs of Washington, DC at the: 

Bethesda North Marriott
September 22 - 23, 2012

Personal Consults
Detailed Agenda
Session Descriptions
General Information
Hotel Reservations
Conference Costs
Print a Registration Form



Morning Sessions
Four back-to-back sessions on Saturday morning get us all on the same page and cover an introduction to PXE, the skin, eyes, vascular system and an overview of the latest in PXE research.

Afternoon Workshop Sessions
Saturday afternoon is devoted to breakout sessions in a 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 conversations with PXE specialists.

Fitness, Low Vision, and Vascular Personal Consults - Optional
Where else can you find free one-on-one consultations with experts in low vision, fitness and vascular issues all in one place? Limited time slots are available for these optional consults, and additional special registration is required. Please be sure to indicate your request on your registration form. Family can attend with you.

Fitness Consult: What is fitness doing in a PXE meeting? Did you know the most important thing you can do to minimize the effects of PXE is eat healthy foods and exercise? Schedule a 15-minute consult with ACE certified personal trainer, Graham Harding, to see how you can make your health goals realistic and attainable.

Low Vision Consult: What can low vision services and tools do for you? Find out in a private, one-hour low vision consult with Wendy Mons, low vision specialist. Particular ophthalmology records will be requested during registration and should be brought to your consult.

Vascular Consult: Spend 15 minutes with Dr. Andrea Yancey for a brief consultation focused on your vascular health. If you have questions about any vascular tests results you have received in the past, such as ABIs, carotid or ultrasound studies, bring the reports and results with you to the consult.

Saturday Evening

Dinner and Panel Discussion: Dinner at the Bethesda North Marriott is always a treat! Following dinner a panel discussion entitled, “Balancing the Important Things in Life: Family, Career, YOU!” will be more filling than dessert (which we will also provide). Sip your coffee or tea, and listen to panelists Kim Griffiths, Wendy Wood Hubbard, and Pat Manson discuss their personal experiences repurposing their education and work experience to find or keep employment after vision loss.

Informal Discussion Session: For those who would like to gather for some informal discussion, we’ve arranged a breakout room for your use on Saturday evening after the panel. Share your stories and voice your concerns! There is no facilitator for this session.


Workouts, Workshops and Closing Session

Let’s Get Healthy! You have two options: Graham Harding, personal trainer, will lead us in an Introduction to Fitness workout on Sunday morning at 7:30 AM. Feel energized and ready for the day! All are welcome – he will accommodate all fitness levels. Kim Griffiths, yoga instructor, will lead a simple yoga practice at 7:00 AM. She uses this practice to specifically address balance, depth perception, healing tired eyes, visualization meditation, and controlling your breathing. This is especially beneficial during eye surgery and procedures.

Own Your PXE and an Introduction to Health and Nutrition are the Sunday morning breakouts.

Closing Session: Over the two days we will all have collected many questions and come up with many ideas. This closing session will include questions and answers, information about the state of your foundation, and how we can Build Tomorrow Together!

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Detailed Agenda

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Saturday, 9/22/2012 – Salon A/B (unless otherwise noted)
7:00 AM-5:15 PM – Registration [Outside Salon A/B]
7:30 AM-9:15 AM – Breakfast
9:15 AM-10:15 AM – Introduction and Skin Manifestations of PXE
10:15 AM-11:15 AM – Eye Manifestations and Treatments
11:15 AM-11:25 AM – White Cane '& More' Low Vision Resource
11:25 AM-11:45 AM – Break [Outside Salon A/B]
11:45 AM-12:15 PM – Vascular Manifestations of PXE: Know the Signs
12:15 PM-12:45 PM – PXE Research Update
12:45 PM-2:00 PM – Lunch
2:00 PM-3:30 PM – Genetics of PXE [Salon A/B] or Coping with PXE [Salon C]
3:30 PM-4:00 PM – Break [Outside Salon A/B]
4:00 PM-5:30 PM – Women’s Issues [Salon A/B] or US Insurance Issues [Salon C]
6:30 PM – Dinner and Panel Discussion
After dinner – Informal Discussion Session [Salon C]

Sunday, 9/23/2012 – Salon A/B (unless otherwise noted)
7:00 AM-8:30 AM – Yoga Practice [Brookside B]
7:30 AM-8:30 AM – Beginner Fitness Workout [Brookside A]
8:30 AM-9:30 AM – Breakfast
9:30 AM-11:00 AM – Own Your PXE [Salon A/B] or Introduction to Health & Nutrition [Salon C]
11:00 AM-11:15 AM – Break [Outside Salon A/B]
11:15 AM-12:30 PM – Closing: General Q & A, State of Your Foundation

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Session Descriptions

Coping with PXE
Being diagnosed with PXE can be an overwhelming and difficult experience. Gain perspective and strength to deal with diagnosis and cope productively with uncertainty.
Presenter: Diane Baker, CGC
Saturday 2:00 PM – Salon C

Eye Manifestations and Treatments
A description of the anatomy of the eye, vision problems caused by PXE, preventive measures and current treatments.
Presenter: Wai Wong, MD, National Eye Institute, National Institutes of Health
Saturday 10:15 AM – Salon A/B

Fitness Consult
Time to ask personal questions about diet and exercise. Learn what will work for you and how to remain faithful to a healthy program. Registration required.
Expert: Graham Harding, ACE Certified Personal Trainer
Saturday, by appointment only – Brookside A

Fitness Workout
All welcome! You can participate to the extent you are able – there will be something for everyone. Bring a yoga mat or the towel from your room. Wear loose fitting clothing or exercise clothes if you have them, and sneakers.
Expert: Graham Harding, ACE Certified Personal Trainer
Sunday 7:30 AM – Brookside A

Genetics of PXE
What are genes? What is a mutation? Basic genetic concepts and how possible treatments are examined will be covered.
Presenter: Olivier Le Saux, PhD, University of Hawaii School of Medicine
Saturday 2:00 PM – Salon A/B

Introduction and Skin Manifestations of PXE
What is PXE, what are the signs that lead to diagnosis, and what are the effects on the skin?
Presenter: Lionel Bercovitch, MD, Medical Director, PXE International
Professor, Dermatology, Brown University
Saturday 9:15 AM – Salon A/B

Introduction to Health and Nutrition
What should I be eating? Why are reduced fat foods not good in general? How much exercise is right for me? Sage advice from an expert in fitness and health, and a practitioner.
Presenters: Graham Harding, ACE Certified Personal Trainer
Elizabeth Terry, Executive Director, PXE International, and Trainee
Sunday 9:30 AM – Salon C

Low Vision Consult
One hour, private low vision consultation with Wendy Mons, low vision specialist. Registration required.
Expert: Wendy Mons, Low Vision Specialist
Saturday and Sunday, by appointment only – Middlebrook

Own Your PXE
Steps to take to help manage your PXE: don’t be controlled or consumed by it.
Presenter: Pat Manson, JD, PXEer and MemberGram columnist
Sunday 9:30 AM – Salon A/B

PXE Research Update
PXE International's strategic plan for research on PXE involves dozens of scientists, the enormous Registry and BioBank, the epidemiological study, and far-reaching strategies.
Presenter: Mike Dean, PhD, National Cancer Institute, National Institutes of Health
Saturday 12:15 PM – Salon A/B

US Insurance Issues: SSDI and LTD
Insurance and PXE: disability issues, appealing your claim with your health insurance provider, and more.
Presenter: Pat Manson, JD, PXEer and MemberGram columnist
Saturday 4:00 PM – Salon C

Vascular Manifestations of PXE: Know the Signs
Know the signs and symptoms of vascular disease in PXE.
Presenter: Andrea Yancey, MD, University Surgical Associates, University of Louisville
Saturday 11:45 AM – Salon A/B

Vascular Consult
A brief vascular health consultation with vascular specialist, Dr. Andrea Yancey. Registration required.
Expert: Andrea Yancey, MD, University Surgical Associates, University of Louisville
Saturday only, by appointment – Brookside B

White Cane '& More' Low Vision Resource
Discover the latest aids and appliances that are helping many to cope with low vision. Visit with Burt thorughout the weekend to learn more.
Expert: Burt Levy, The White Cane '& More' and Beyond Specs store, Silver Spring, MD
Saturday and Sunday – Outside Salon A/B

Women’s Issues
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
Saturday 4:00 PM – Salon A/B

Yoga Practice Session
All welcome! Join Kim for a simple yoga posture and breathing practice session. Wear comfortable clothing and bring a yoga mat or two towels to use on the floor.
Presenter: Kim Griffiths
Sunday 7:00 AM – Brookside B

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General Information

Casual, comfortable attire is appropriate for all sessions and meals. Exceptions are Fitness Workout and Yoga - see session descriptions.

If cancellation is necessary, please call PXE International’s office at 202.362.9599, extension 208. Cancel by Friday, 9/7/2012, for a 100% refund. Cancel by Friday, 9/14/2012, for a 50% refund. No refund for cancellations made after Friday, 9/14/2012.

Hotel Reservations
Make your hotel reservations by Friday 8/31/2012 to guarantee the special room rate of $145/night for Friday (9/21) and Saturday (9/22). Please reference "PXE International 2012 Conference" when registering by phone (1.877.212.5752) or book your rooms online. Registering at the Bethesda North Marriott separate from the PXE International group will result in a $40 penalty added to your bill to partially cover our penalty.

Conference Costs
Early Bird registration deadline extended to 9/10/2012: $170 per person.
After 9/10/2012: $230 per person.

Hotel room at the Bethesda North Marriott:
$145 per night - mention "PXE International 2012 Conference"
$40 penalty for not using the group code to compensate for part of the fee imposed on PXE International by the Marriott.

Onsite parking for meeting attendees is available at a discounted rate of $5.00/day.

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 2012 Biennial Conference. PXE International will distribute a contact list with names and contact information only to PXE International 2012 Biennial Conference attendees. Please contact the PXE International office by email (Mary) 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.

Public Transportation
The hotel is a block from the White Flint station on the Red Line of Washington’s Metrorail system for simple and cost-effective access to Reagan National Airport and the entire DC metro area.

If you wish to share a room with another attendee, contact the PXE International office by Friday, 8/24/2012 at 202.362.9599 or by email (Mary). Also be sure to make note on your registration form where roommate requests are designated.

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. From the hotel Reagan National Airport is 20 miles S, Dulles International Airport is 25 miles SW, and BWI is 25 NW. The Bethesda North Marriott is accessible by I-495, I-270 and other major arteries. Details for driving directions, Metro, and shuttle services can be found on the hotel's website or by calling the Bethesda North Marriott at 800.859.8003. Free NIH shuttle service from the airport for patients is also available.


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