PXE International Conference 2020: Virtual Meeting

October 16 - 18, 2020

To register - click this link.

Every two years, since 1997, PXE International has held a conference for people affected by PXE and their loved ones. This year will be different. Because of the pandemic, we will be holding this on Zoom. This is the 25th anniversary of PXE International, but we will have to wait to celebrate until 2022, provided we can gather that year. Maybe we can all still raise a glass together virtually!

We are aware that it is easy to make the workshops convenient to all when we are in person. We are all in one time zone, usually eastern US time. This time, we will all be in the comfort of our homes, we will not pay to travel, and we will not have to pay for hotels. However, we will all be in our time zones – and we span the globe. We thought long and hard about this, and it is inevitable that the sessions are not placed at good times for everyone in every time zone. Perhaps for those not in a convenient time zone, you can pretend you flew to Philly and put yourself on eastern US time? We are kidding, but we are truly sorry about the inconvenience of some of this meeting.

All talks will be recorded, and provided there are no technical glitches, we will have them up for you to watch a few hours after each session is concluded.

We are aware that it is hard to be on Zoom all day or night – many of us are now on the screen for work all the time. We will break this up with movement and visualization times. We recommend that sometimes you turn off your video and just listen so that you can walk around, stretch, make meals and so on.

We want all of you to be comfortable using Zoom, and so we are requiring a training for those of you who are not using it regularly.

We realize this schedule is complicated. After you register, and pay $25, we will send you, via email, your own schedule, customized to your timezone.

If you need a scholarship, please email Mary Peckiconis - mpeck@pxe.org

 

Pre-Conference Zoom training and orientation

Note: You must attend one training session unless you regularly use Zoom and can:

  • Rename yourself after entering (we will give codes for affected individuals and support persons so that we can do proper breakouts at time).
  • Turn your video on and off.
  • Mute and unmute yourself.
  • Raise and lower your hand.
  • Use the chat
  • Show gallery view, show up to 49 people on your screen, and show speaker view.
  • Spotlight.
  • Go into a breakout room and come back to the main room.
  • Section A: Wednesday, October 14th - 3 PM PDT/6 PM EDT/12 AM CEST (Thursday)/9 AM AEDT (Thursday)/11 AM NZDT (Thursday)
  • Section B: Wednesday, October 15th - 7 PM PDT/10 PM EDT/4 AM CEST (Thursday)/1 PM AEDT (Thursday)/3 PM NZDT (Thursday)
  • Section C: Friday, October 16th - 7 AM PDT/10 AM EDT/4 PM CEST/1 AM AEDT (Saturday)/3 AM NZDT (Saturday)
  • Section D: Friday, October 16th - 3 PM PDT/6 PM EDT/12 AM CEST (Saturday)/9 AM AEDT (Saturday)/11 AM NZDT (Saturday)

 

Session 1: Meet and Greet (1 hour)

In this session, you will have the opportunity to meet other people, share your experience of living with PXE or living with someone with PXE and get to know some of the people with whom you will be sharing the next few days. We will be creating breakout rooms for your country and states/provinces, depending on how many people attend.

  • Section A: Friday, October 16th - 11 AM PDT/2 PM EDT/8 PM CEST/5 AM AEDT (Saturday)/7 AM NZDT (Saturday)
  • Section B: Friday, October 16th - 3 PM PDT/6 PM EDT/12 AM CEST (Saturday)/9 AM AEDT (Saturday)/11 AM NZDT (Saturday)

 

Session 2: Opening the Conference and Overview of the weekend (30 minutes)

This will be a brief session to describe how we will spend our time together over the weekend.

  • Section A: Friday, October 16th - 12 PM PDT/3 PM EDT/9 PM CEST/6 AM AEDT (Saturday)/8 AM NZDT (Saturday)
  • Section B: Friday, October 16th – 4 PM PDT/7 PM EDT/1 AM CEST (Saturday)/10 AM AEDT (Saturday)/12 PM NZDT (Saturday)

 

Session 3: Orienting Us as a Community (30 minutes followed by guided quiet time)

General overview of pseudoxanthoma elasticum (PXE), PXE International, and our community - Sharon Terry, CEO

  • Saturday, October 17th - 7 AM PDT/10 AM EDT/4 PM CEST/1 AM AEDT (Sunday)/3 AM NZDT (Sunday)

 

Session 4: PXE and Skin (1 hour, including presentation and questions)

General overview of pseudoxanthoma elasticum (PXE) effects on skin, including what is known about reconstructive surgery

  • Saturday, October 17th – 7:45 AM PDT/10:45 AM EDT/4:45 PM CEST/1:45 AM AEDT (Sunday)/3:34 AM NZDT (Sunday)

 

Movement break (15 minutes)

 

Session 5: PXE and the Eye (1 hour, including presentation and questions)

General overview of pseudoxanthoma elasticum (PXE) effects on the eye, including what is known about treatments

  • Saturday, October 17th – 9 AM PDT/12 PM EDT/6 PM CEST/3 AM AEDT (Sunday)/5 AM NZDT (Sunday)

 

Food break (1 hour)

 

Session 6: Genetics of PXE (1 hour, including presentation and questions)

We’ve known the gene for 20 years now, what’s new about what we know about PXE genetics?

  • Saturday, October 17th –11 AM PDT/2 PM EDT/8 PM CEST/5 AM AEDT (Sunday)/7 AM NZDT (Sunday)

 

Guided movement visualization break (15 minutes)

 

Session 7: PXE and other organ systems (1 hour, including presentation and questions)

Other systems, besides skin and eyes, might be affected in PXE. These include the peripheral vascular system (legs and arms), gastrointestinal system, and other arteries. This will provide some information and describe what we do not know.

  • Saturday, October 17th –12:15 PM PDT/3:15 PM EDT/9:15 PM CEST/6:15 AM AEDT (Sunday)/8:15 AM NZDT (Sunday)

 

Session 8: PXE Support (1 hour)

Each person will go to a breakout room with no more than 9 other people. Option to go into a room with other people affected with PXE, or with others who support someone with PXE (spouse, partner, parent, friend). Time for informal discussion.

PXE International staff will be present in each room to provide technical assistance.

  • Saturday, October 17th –1:15 PM PDT/4:15 PM EDT/10:15 PM CEST/7:15 AM AEDT (Sunday)/9:15 AM NZDT (Sunday)

 

Session 9: Main session gathering

Gather back in the main room to close (option to return to breakout rooms if you wish). All of the session recordings will be available at this time.

  • Saturday, October 17th –2:15 PM PDT/5:15 PM EDT/11:15 PM CEST/8:15 AM AEDT (Sunday)/10:15 AM NZDT (Sunday)

 

Session 10: Questions and Answers (1 to 2 hours, as needed, including breakout networking if desired)

This will be a time to ask questions and discuss what you have heard. If you could not attend the sessions, please watch as many of them as you can before jumping into the discussion. (This session is planned primarily for Australia, Asia, New Zealand, others are of course welcome.)

  • Saturday, October 17th –6 PM PDT/9 PM EDT/3 AM CEST/12 PM AEDT (Sunday)/2 PM NZDT (Sunday)

 

Session 11: Return to the Conference

Reopening the sessions

  • Sunday, October 18th - 7 AM PDT/10 AM EDT/4 PM CEST/1 AM AEDT (Monday)/3 AM NZDT (Monday)

 

Session 12: PXE Research (4 hours including breaks)

Reports from several PXE researchers from around the world

  • Sunday, October 18th - 7 AM PDT/10 AM EDT/4 PM CEST/1 AM AEDT (Monday)/3 AM NZDT (Monday)

 

Session 13: Networking (1 Hour)

  • Sunday, October 18th - 11 AM PDT/2 PM EDT/8 PM CEST/5 AM AEDT (Monday)/7 AM NZDT (Monday)

 

Session 14: Closing

  • Sunday, October 18th - 12 PM PDT/3 PM EDT/9 PM CEST/6 AM AEDT (Monday)/8 AM NZDT (Monday)
Event Date

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