20th Anniversary Conference

 

frontpage_slideshow 20th Anniversary Conference logo

 

 

This year’s 20th Anniversary Conference provided attendees with a unique experience and opportunity.
We invited the PXE community – those with PXE and their family members – to play an important role
in determining what the next 20 years looks like for people living with PXE.

 

 

Bethesda North Marriott in the suburbs of Washington, DC
October 16-18, 2015

 


People 

Many things are not known about PXE and how it affects individuals. It is critical that we find answers as quickly as possible. This cannot be done without all of you.

This year’s meeting was intentionally different. You learned about what we knew about PXE and what we didn't know. In addition, you took the reins and worked to decide what should be the research priorities for better care in PXE. 

PXE International received a grant from the Patient Centered Outcomes Research Institute (PCORI) to help hold this very important meeting. We'd also like to thank everybody who helped us with funding to help people in financial need attend the meeting.

The bottom line: Thank you so much for joining us and other people with PXE and their loved ones to celebrate 20 years of PXE International


 

Agenda

Download Agenda

Friday night, October 16, 2015

4:00 PM: Let Your Yoga Dance - Room TBD
  Dina Gerasia
6:00 PM: Reception - White Flint Ampitheater Foyer
6:30 PM: Dinner - White Oak B
7:00 PM: Celebrating 20 years of PXE International!
  Honorees:
  Diane Baker, Genetic Counselor - Diary of a non-singer
  Francis Collins, Director, NIH - If not now, tell me when

 

 

 

 

Diane Baker, CGC

Diane Baker, Genetic Counselor

Francis Collins, MD, PhD

Francis Collins, Director, NIH

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Saturday, October 17, 2015
Saturday morning begins with an overall orientation and introduction to PXE. Leading experts will discuss what we know and what remains to be discovered. Clinicians, researchers and affected individuals from the PXE community will lead discussions. Brainstorming, refining content and voting will help determine future questions for PXE research.

7:30 AM: Yoga - Brookside A
  Michelle Terry
8:00 AM: Breakfast - White Oak B
9:00 AM: Orienting Us to the Day - White Flint Ampitheater
  Sharon Terry, CEO, PXE International
9:15 AM: Living into the Questions - White Flint Ampitheater
  PXEers Jessica Harper (5 minutes) and Georgina Dench (5 minutes)
9:30 AM: What We Know about PXE - White Flint Ampitheater
  Lionel Bercovitch, MD
10:30 AM: Break - White Flint Ampitheater Foyer
11:00 AM: Brainstorming the Topics: Eyes, skin, etc. - White Flint Ampitheater
  Moderator: Sharon Terry
11:30 AM: Prioritizing the Questions - White Flint Ampitheater
12:00 PM: Lunch - White Oak B
1:00 PM: Three facilitated, concurrent 90-minute breakouts 
  Breakout #1 Vitamins/Alternatives - Forest Glen
  Breakout #2 Eye - Glen Echo
  Breakout #3 Loved Ones - Brookside B
   
  Defining the questions and determining how to conduct research
  Part 1: Broad discussion and brainstorming
  Part 2: Refining the research questions: What are the right questions?
             What outcomes matter? Who should participate in the studies?
             Who is often left out that should be included?
   
2:30 PM: Break - White Flint Ampitheater Foyer
3:00 PM: Three facilitated, concurrent 90-minute breakouts 
  Breakout #1 Skin - Forest Glen
  Breakout #2 Cardiovascular - Glen Echo
  Breakout #3 TBD - Brookside B
   
  Defining the questions and determining how to conduct research
  Part 1: Broad discussion and brainstorming
  Part 2: Refining the research questions: What are the right questions? 
             What outcomes matter? Who should participate in the studies?
             Who is often left out that should be included?
   
4:30 PM:  Break - White Flint Ampitheater Foyer
​5:00 PM: Round Robin reality check - White Flint Ampitheater
  Participants gather in the main room to hear all of the topics.
​6:00 PM: Dinner on your own: A list of restaurants and tourist activities will be provided.
​8:00 PM: Support issues/sharing time - Brookside A

 

Sunday morning, October 18, 2015

On Sunday morning we will summarize Saturday’s discoveries and determine ways for the community to impact the research agenda that will be developed by the close of this year’s conference.

7:00 AM: Yoga - Brookside A
  Michelle Terry
7:00 AM: Chapel - Brookside B
8:00 AM: Breakfast - White Oak B
9:00 AM: Reflections on the PXE Research Agenda - White Flint Ampitheater
  Patrick Terry, President, PXE International
9:30 AM: Insights into the process and conclusions - White Flint Ampitheater
10:00 AM: What can we do as a community to move forward with this research agenda?
  PXEer, 3 breakouts: Forest Glen, Glen Echo, Brookside B
11:00 AM: Break - White Flint Ampitheater Foyer
11:30 AM: Summary and Closing - White Flint Ampitheater
  Sharon Terry, CEO, PXE International

 

 

 

 

 

 

 

 

 

 

 

 

 

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Conference Cost

You must be staying at the Bethesda North Marriott under the “PXE International 20th Anniversary Conference” room block to qualify for these conference registration rates. See the section titled, "Book your sleeping rooms."
 

  Deadline Cost
Early Bird 10/15/2015 Extended! $170 each
On Site 10/16/2015 $230 each

 

Payment Type  
Check payable in US dollars to: PXE International
  4301 Connecticut Ave NW, Suite 404
  Washington, DC 20008
   
Credit Card: Through the online conference registration form
  By phone with Mary Peckiconis, 202.362.9599, ext 208

 

 

 

 

 

 

 

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Scholarships

Download a scholarship application form
Complete an online scholarship application form

This year PXE International is a Patient Centered Outcomes Research Institute (PCORI) grant awardee. This means that we will have support for our 20th Anniversary Conference and we will be able to offer scholarship funding to help others attend. To apply for a scholarship to attend the conference, please complete and submit a scholarship application form by September 12, 2015. Decisions on foreign applications will be made on a rolling basis. Decisions on U.S. applications will be made within 48 hours of the application deadline. If you are submitting an application for scholarship and are depending on a scholarship award to attend, please do not register for the conference until you know PXE International’s decision. You must be registered under PXE International's hotel room block to qualify for the scholarship. 

Requirements:

  • Each applicant must submit a scholarship application form for themselves, unless a minor.
  • Scholarship application form requires an explanation of why you are applying for the scholarship and a brief budget of expected expenses.
  • Applicants must attend the entire conference, from 10/16-10/18/2015.
  • Expenses are reimbursed only, not paid in advance. Scholarship recipients must cover all up-front costs.
  • Reimbursable expenses include two nights lodging at the discounted group rate, transportation and airfare only. Conference registration fees are waived. 
  • Applicants may request up to $500, which includes the waived conference registration fee of $170. But please do what you can financially so that PXE International is able to support more individuals wishing to attend.
  • Hotel and non-airfare transportation receipts must be dated the three days of the conference, October 16, 17 and 18, 2015.
  • All expenses (original, faxed or scanned) must be submitted with receipts and postmarked beginning October 18 but no later October 28, 2015. Expenses submitted after this date will not be reimbursed.
     

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Conference registration

Print a conference registration form - This Adobe Acrobat form has fields you can fill in, then print or save to your hard drive.

Register by phone: 202.362.9599, extension 208, Mary Peckiconis
Register by fax: 202.966.8553, attention Mary Peckiconis
Register by mail: PXE International, 4301 Connecticut Ave NW Suite 404, Washington DC 20008

Register for the conference online

 

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Book your sleeping rooms at the Bethesda North Marriott

Book your sleeping rooms online

You are responsible for making your own sleeping room reservations at the Bethesda North Marriott. We have reserved a block of 50 sleeping rooms under the title “PXE International 20th Anniversary Conference.” These rooms are available on a first-come, first-served basis. The hotel discounts PXE International’s use of the large meeting rooms because we guarantee a number of sleeping rooms will be used. We pay a penalty for sleeping rooms not registered under the PXE International room block.

Book your sleeping rooms online: https://resweb.passkey.com/go/55778b49
Book your sleeping rooms by phone: 1 800-266-9432; reference "PXE International 20th Anniversary Conference"
Cost within "PXE International 20th Anniversary Conference" room block: $99 per night
Dates available: Friday, 10/16/2015, and Saturday, 10/17/2015
Deadline to register under the PXE International room block: Friday, 10/2/2015

Bethesda North Marriott
http://www.marriott.com/hotels/travel/wasbn-bethesda-north-marriott-hotel-and-conference-center/ 
5701 Marinelli Road
Bethesda, Maryland 20852
Toll Free: 800-859-8003
Direct: 301-822-9200

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

Transportation from the Airport
The Bethesda North Marriott is located close to 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 miles 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 by calling the Bethesda North Marriott at 800.859.8003 or on the hotel’s website at http://marriott.com/property/propertypage/wasbn

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.

 

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15th Anniversary Challenge campaign closes this year

Thank you to all who have contributed! 

The 15th Anniversary Challenge launched in 2010 with the goal to raise $1.5 million in 5 years. As of early June we have raised $1,385,222 – only $114,778 to go by the end of 2015! Please donate to help reach this goal. All donations are tax-deductible.

DonateB1

 

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General Information

Attire
Casual, comfortable attire is appropriate for all sessions and meals.

Cancellations
Please call PXE International’s office at 202.362.9599, extension 208.  Cancel by Friday, 10/2/2015, for a 100% refund. Cancel by Friday, 10/9/2015, for a 50% refund.  No refund for cancellations made after Friday, 10/9/2015.

Photo/Video/Contact Information 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 20th Anniversary Conference. PXE International will distribute a contact list with names and contact information only to PXE International 20th Anniversary Conference attendees. Please contact the PXE International office by email mpeck@pxe.org (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.

Raffle

If you would enjoy creating or donating an item to the raffle, please contact the PXE International office by email mpeck@pxe.org (Mary) or by phone (202.362.9599). We welcome and appreciate any and all donations!

Roommates
If you are traveling alone and wish to share a room with another attendee, note it on your registration form or contact the PXE International office by email mpeck@pxe.org (Mary) or by phone (202.362.9599).

 

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