2010 Biennial Conference

Thank you to all who attended the PXE International 2010 Biennial Conference held at the Bethesda North Marriott September 10-12, 2010. It was our biggest conference yet and we enjoyed our time with you!

Welcome Letter
Workshop Schedule
Workshop Descriptions and Speaker Bios
Award Winners
Volunteers and Donors
Feedback from Attendees

Photo gallery from the 15th Anniversary Gala!

 Welcome Letter

Dear Friends,

Welcome! We are delighted to be with you for our 15th Anniversary celebration of the founding of PXE International! Celebrate 15 years of accelerated research, discoveries, and the path to treatment.  Come learn the latest. Meet new friends, share stories with old ones.  We’ve got something for everyone.

We are grateful to you – some of you are long-time supporters and friends, some are the founding ‘gang’ that worked hard to get this foundation going, some are new friends we welcome to our tribe.

Friday night we will just rejoice together in how far we have come. We will break bread together and celebrate our honorees, Robin and Joe Maas, and Jessica Harper and Tom Rothman. We’ll look forward to new transitions and take a look at from where we have come and to where we are going. We’ll enjoy the music of the Rockbrokers – a great group of men and women who have supported PXE International for years and years. 

Saturday brings a whole day of workshops – we will keep you hopping!  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. 

You are free on Saturday night to enjoy the DC area. The hotel is a block from the 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. The next page contains 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. 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.

Sunday we have another round of wonderful workshops. And then, 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!

Thanks for all you have done for yourself and others – the thousands of individuals around the world affected by pseudoxanthoma elasticum (PXE). We are so happy to be together these days.


PXE International Board and Staff


Workshop Schedule

Saturday 8:30am - Plenary Address

Saturday 10:30am - Workshop Session A
A1 - Genetics of PXE
A2 - Low Vision Session
A3 - PXE Research
A4 - Women's Issues

Saturday 1:30pm - Workshop Session B
B1 - Genetics of PXE
B2 - Dermatologic Surgery and PXE
B3 - PXE and the Eye
B4 - Own Your PXE

Saturday 3:30pm - Workshop Session C
C1 - Building a Career without Boundaries
C2 - Dermatologic Surgery and PXE
C3 - Vascular Manifestations of PXE
C4 - General Q & A

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

Sunday 9:00am - Workshop Session D
D1 - Building a Career without Boundaries
D2 - Coping with PXE
D3 - Vascular Manifestations of PXE
D4 - US Insurance Issues


Workshop Descriptions and Speaker Bios

Click to expand or hide

Plenary Address

Building a Career Without Boundaries

Coping with PXE

Dermatologic Surgery and PXE

General Networking

General Q & A

Genetics of PXE

Lighter Side of Low Vision

Low Vision Session

Own Your PXE

PXE and the Eye

PXE Research

US Insurance Issues

Vascular Manifestations of PXE

Women's Issues


Award Winners

At each biennial conference, PXE International gives awards to individuals who have given to the community in outstanding ways. This year we were proud to honor Joe and Robin Maas and Jessica Harper and Tom Rothman. 

Joe and Robin MaasJoe and Robin Maas
These two individuals have given a great deal to PXE International over the eleven years that they have been members of PXE International. We remember the many conversations we had after their son Kevin was diagnosed. They have both given of their time, energy, and resources a great deal since that time. Hailing from Harrison, OH, they've driven us to ask the right questions and leave no stone unturned. Joe has brought his skills as a successful businessman, and his training as a pharmacist to the table. PXE International has benefitted greatly from their dedication. When Joe says he will fly in for the conference, he means it - he piloted his own plane to this meeting!

Jessica Harper, Tom Rothman and their childrenJessica Harper and Tom Rothman
It has been more than eight years since Jessica and Tom came to know PXE International and began to work for the goal of mitigating the effects of this condition. Jessica joined the board of directors in 2002, and rolled up her sleeves and jumped in. She and Tom have participated in our many virtual fundraisers and outreach campaigns, engaging a wonderful network. Jessica, an actress, children's book auther (with many songs and stories about Elizabeth and Nora, pictured here), and a singer/songwriter, has often donated her CDs and books to PXE International as fundraisers. And at every biennial conference, all of the great Hollywood swag at the raffle table is generously donated by Tom, CEO of 20th Century Fox. Check out Jessica's blog for everything from dogs to underpants...


Volunteers and Donors

The 2010 Biennial Conference marked the official beginning of the PXE International 15th Anniversary Challenge, which set the bold goal of raising $1.5 Million in five years. We would like extend a special thanks to all of our conference participants who offered a donation - because of your generosity we raised over $120,000 on our kickoff weekend! 

Thanks to our sponsors, Sigma-Tau Pharmaceuticals, Inc. and GeneDx. Without your generosity, our biennial conference would not be possible.

Thanks to those companies and individuals who made contributions to our silent auction and raffle. You raised $2,700.


       20th Century Fox
       ai squared
       J.H. Breakell & Co.
       Mons International

    Paula Cooper       
    Jessica Harper
    Nancy Heyner
    Anna-Susan Marais
    Wendy Mons       
    Cathy Oliveira
    Elizabeth Terry       
    Kerry Wilson

Thanks to this year's exhibitors and vendors:

        ai squared
        American Academy of Ophthalmology
        Independent Living Aids
        International Academy of Low Vision Specialists
        National Rehabilitation Information Center
        Spectrios Institute for Low Vision
        Burt Levy of Beyond Specs and The White Cane Store '& More' [301.589.0866]
        Scott Holden of Vision Support Systems [301.388.2040]

Thanks to those generous individuals who donated to the Conference Scholarship Fund and made it possible for scholarship recipients to attend: Diane Baker, Marilyn Brauer, Barbara Loarie, James Milan, Joseph McInerney, Wendy Wood Hubbard and one other generous individual who wished to remain anonymous.

And thanks to our volunteers, whose hard work goes a long way to making our conference a success: Julia and Gerald Holman, Jacob Hudson and Mary LeBlanc.


Feedback from Attendees

Thanks to all those who attended the PXE International 2010 Biennial Conference held September 10-12 at the Bethesda North Marriott. We enjoyed our time with you and enjoyed seeing your feedback. Here's what you had to say about this year's meeting:

The best part of the conference was...
We received so much positive feedback this year. Attendees were impressed with the "top caliber, well-prepared and passionate speakers." They also appreciated the quality of information presented to them and the opportunities to ask their questions to the experts. But, as always, the best part of the conference for most of our attendees is the chance to meet other individuals whose lives have been affected by PXE and to know that they are not alone.

The worst part about the conference was...
Similar to previous years, the biggest and one of the only complaints from conference participants was that there simply wasn't enough time to do everything! Our participants often wish to attend every session, and we wish we could structure the conference so that they are able. Other comments mentioned the audio portions of sessions not always being loud enough or simply being overwhelmed by so much information. We promise to work hard to improve this for 2012!

Suggestions for the next conference...
We will work hard to address the comments and suggestions you had for us. These include creating a session designed specifically for children, spouses and siblings of those affected by PXE, providing more handouts, providing bags in which to hold all the information you collect, and having more time for general networking.

Would you reccommend other PXEers attend this conference in the future? What would you say to them?
We are delighted that every participant reported that they would recommend the PXE International conference to other PXEers. The recommendations were wonderful. Some examples include:

  • "The ability to meet and talk to the best doctors and experts is priceless."
  • "It is a 'don't miss!' This will be a positive, life-changing experience! You will be renewed, refreshed, uplifted, encouraged and you have to go meet the life-long friends waiting and hoping to meet you too! For relatives and friends: a 'must-go' that you'll never regret.
  • "Because PXE is so rare, this was my first time learning about it from people who know what it is. I was diagnosed 14 years ago and this was the best learning opportunity. I should have come sooner!"

We also invite you to read Kim Douglas' story of her weekend with the PXE Community.

We are thrilled that our conference attendees find so much meaning and satisfaction in our conference. We look forward to seeing you in 2012!