2008 Biennial Conference



Thank you to all who attended the PXE International 2008 Biennial Conference held at the Bethesda North Marriott September 19-21, 2008. We enjoyed our time with you!

Conference Overview
Workshop Schedule  
Workshop Descriptions and Speaker Bios  
New Vision Award  
The Faces of PXE  
Volunteers and Donors  
Feedback from Attendees 


Friday, September 19, 2008 - Evening Social and Welcome
Founders Patrick and Sharon Terry welcome PXEers old and new! There is nothing like Friday evening at a PXE gathering – meeting others who share your experience – and want to learn with you and about you! You´ll gather with old and new friends, learn about the exciting events of the next two days and share a delicious meal.

Saturday, September 20, 2008 - 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, we offer a variety of informative workshops. Top clinicians and researchers will present the latest information in an easy to understand format – while allowing plenty of time for in-depth discussion. The small group format will allow you to delve with greater depth into the areas that concern you most, while offering one-on-one communication with PXE specialists. Note: most workshops are offered multiple times so that you will not miss topics that are important to you and all questions can be addressed. You´ll find workshop descriptions and registration forms in the next pages.

Also notice the low vision workshop, coupled with an individual consult: a special offering repeated this year. This session will give you an overview of what low vision services can do for you. It will be conducted by Wendy Mons, a low vision specialist. It is offered only once, on Saturday morning. A limited number of slots will be available for an individual, private, low vision consultation with the presenter, at no cost to you. In order to have the private consultation, you must bring particular ophthalmology records (we will tell you which ones) and you must attend Wendy´s Low Vision Session A2 at 10:30 on Saturday morning. You must pre-register for the private consultation.

Saturday Evening 
You are free on Saturday night to enjoy the DC area. The hotel is a block from the DC Metro–a clean and efficient 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´ll arrange several peer-to-peer sharing sessions for Saturday evening. This will be an opportunity for individuals to gather, share their stories and voice 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 21, 2008 - Workshops and Closing Session
Workshops continue on Sunday.  See the workshop schedule page.  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 of this and choosing the raffle winners too!



Saturday 8:30 am - Plenary Address

Saturday 10:30 am - Workshop Session A 
A1 – Genetics of PXE
A2 – Low Vision Session
A3 – PXE and the Eye
A4 – Women´s Issues

Saturday 1:30 pm - Workshop Session B
B1 – Genetics of PXE
B2 – Coping with PXE
B3 – PXE and the Eye
B4 – Low Vision Rehabilitation

Saturday 3:30 pm - Workshop Session C 
C1 – PXE Research
C2 – Own Your PXE
C3 – Coping with PXE
C4 – General Q & A

Saturday 7:30 pm - Informal Sessions
Lighter Side of Low Vision
General Networking

Sunday 9:00 am - Workshop Session D 
D1 – PXE Research
D2 – Insurance
D3 – Genetic Testing
D4 – Raise It Up!!



Click to expand or hide

Plenary Address

Coping with PXE

General Networking

General Q & A

Genetic Testing

Genetics of PXE


Lighter Side of Low Vision

Low Vision Rehabilitation

Low Vision Session

Own Your PXE

PXE and the Eye

PXE Research

Raise It Up!!

Women's Issues




Julia Holman Honored with New Vision AwardJulia Holman

On Friday night of the conference, Sharon Terry, Executive Director, was delighted to present Julia Holman with the New Vision Award. Julia inspires us all to move mountains as she has done – raising awareness, raising funds and remaining dedicated through thick and thin.

Julia is a champion for all who have PXE, and has been a model of what it means to get out there and do something! Julia says: “What the experience of having this disease and learning how to cope through PXE International friendships, fundraising, etc…has brought to me, is a new vision of facing disease in a proactive way rather than feeling helpless.” Bravo, Julia!

As part of Julia´s award, Patrick Leblanc, a fellow PXEer, provided Julia with a tandem bike ride around Washington, DC on Friday afternoon.

Julia Holman Tandem Bike



Many thanks to Rick Guidotti of Positive Exposure for all the beautiful Faces of PXE!

Faces of PXE 2008a

Faces of PXE 2008b

Faces of PXE
Faces of PXE



A huge thank you to the Silent Auction and Raffle Donors of the PXE International 2008 Conference held September 19 - 21. You raised $3,156!

20th Century Fox
Ai Squared
J.H. Breakell & Co
Mons International

Michele Adams
Paula Cooper
Jessica Harper
Jim Hennessy
Kimberly Kerepka
Anna-Susan Marais
Cheri Moyers
Cathy Oliveira
Mary Peckiconis
Natalie Sander

Thanks to Patrick LeBlanc for donating a tandem bike ride and guiding Julia Holman around Washington, DC as part of her New Vision Award.

Thanks to our Exhibitor, Burt Levy of the White Cane Store (301.589.0866).

Thanks to our volunteers Cathy and Colleen Dunning, Cameron Cohen, Elizabeth Terry and Lisa Wise.

Thanks to the kind individuals who donated to the Conference Scholarship Fund and made it possible for scholarship recipients to attend: Robin Beasley, Linda Falconiero, Donna Gilbert, Jessica Harper, Rosemary Howard, Barbara Loarie, Clare Mangine, James Milan, Lauretta Shuler, Martha Swift, and Elnor Williams.



Thank you to all who attended the PXE International 2008 Conference held at the Bethesda North Marriott September 19-21. We enjoyed our time with you! And we can see by your feedback that you enjoyed your time with us as well. Here´s what you told us about the conference:

The Best Part of the Conference Was...
We received the most positive comments about the workshops and presenters. Attendees were pleased to learn everything from the basic explanation of what PXE is and what body systems it affects on to a summary of the latest research developments and treatments. The speakers were “excellent” and the conference was “incredibly informative”. Running a close second was the number of positive comments about the people: reacquainting with old friends and meeting new ones, the comaraderie, networking and learning from each other, and of course the efficient and talented staff! Other bright spots – the food and the fun photographer. Thanks again, Rick Guidotti of Positive Exposure, for all your talent and hard work on behalf of PXEers and PXE International!

The Worst Part about the Conference Was...
Tied in this category were the difficulties of traveling to the conference (cost, distance) as well as some organizational issues such as not being able to attend all the sessions and having handouts at each session. Some asked for additional exhibitors. And some just expressed personal regrets about treatment options that weren´t available before and still need to be developed now.

Suggestions for the Next Conference...
In the coming months we will address the suggestions and questions you raised – clarifying the % risk of passing PXE on to your children, defining calcium intake, adding new workshops such as cardiovascular, skin, and nutrition, increasing the number of exhibitors, and holding regional meetings.

What Factor Is Most Likely to Contribute to Your Ability to Attend a Future PXE International Conference?
As is always the case with the PXE International conference, cost and location are the two biggest factors in our members´ decision to attend. To help you plan ahead, we have set the date of the PXE International 2010 Conference for September 10-12, 2010. And we pledge to keep you updated on the latest research and happenings in the PXE world through our eNewsletters, teleconference webinars, MemberGram newsletters and our website.