Message from the President

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Dear Friends,

Welcome from the NAPE Office where early Spring is in the air with bulbs poking above the earth and birds chirping to greet longer sunny days. NAPE Board members started the year with committee activities via conference calling. This brings our Board scattered across the USA and in Canada and England together as needed with great savings in time and costs. Special thanks to Board members Rosemary Atallian and Jane Tipton for managing this helpful innovation.

The Board met in Kansas City after last November's conference and made plans for this year's conference. We hoped to bring Dr. Berthold Struk to talk about the heart and PXE. Dr. Struk practices cardiology in Berlin. Our members know him best as the researcher whose work led to the identification of the gene whose malfunction results in PXE. Dr. Struk performed his research at Harvard University.

After several years of research, and in the long tradition of scientific discovery, Dr. Struk announced his break-through identification of the locus of the gene. At that point, three other labs joined the search building on Dr. Struk's findings. All four labs announced their finding of the gene within the same month. That all four labs identified the same gene confirmed Dr. Struk's work and the validity of his findings. We are thrilled that Dr. Struk will take time from an exceedingly busy schedule to meet with us. This is a wonderful opportunity for us to learn from one of the world's few great authorities on PXE. Though home in Berlin, he has continued to confer and advise by email and telephone.

Dr. Struk's research in PXE would not have occurred if Dr. Kenneth Neldner, after years of seeking, had not been successful in identifying Dr. Klaus Lindpaintner as the main source of funding for the expensive research project. Dr. Neldner, our very own world authority on PXE, participated in the project, including the identification of the PXE families needed for its success. Dr. Neldner has also been vital to the development and life of NAPE. He has been a key speaker at NAPE conferences, sharing with participants information needed for living more fully with PXE. The Board is delighted that Dr. Neldner will be a featured speaker at this year's meeting. He will have two full hours late Friday afternoon to give enough time to guide conference participants in their own health care.

We will meet in Los Angeles, California, on July 15 (Friday) and 16 (Saturday). The first meeting will begin at 4:00 pm Friday, July 16, with Dr. Neldner's two-hour program. Following a short break, we will gather for a buffet supper and have time to share experiences prior to a full Saturday meeting schedule.

We are working with staff of the Jules Stein Eye Institute of UCLA to prepare other presentations. The Jules Stein Eye Institute, among the most highly respected eye centers in the nation for research and clinical services, is heavily involved in macular research and we expect to have a program on this topic - especially on newer therapies and research. We are working on another presentation on how PXE affects the body's elastic tissue, including information on where elastic tissue is found in the human body.

You may know that the FDA is holding hearings on its proposed new food pyramid. The new pyramid is quite different from the current one. It is being hailed by many nutritionists and physicians as a great improvement. We are planning a program on it in relation to PXE nutrition needs.

And finally, we plan to demonstrate our website natural language program and to talk about NAPE automation and its role in providing information to those with PXE. As well, there will be a short business meeting for members.

In short, we have planned an ambitious program for a Friday evening and Saturday. In addition to the buffet supper on Friday, we will provide lunch and snacks on Saturday. Participants will need to provide their own breakfast Saturday morning. The meeting will end no later than 5:00pm on Saturday. Our hope is that participants will leave on Saturday with knowledge to cope with PXE and with new friendships with others coping with similar issues.

All conference activities will take place at the Holiday Inn, Brentwood, which is within walking distance of UCLA and the Jules Stein Eye Institute. We hope many participants will stay at the Holiday Inn, which is giving us a special price, so that you can visit with and get to know your peers.

The Board is working hard to provide a significant PXE conference in Los Angeles. We hope many members, especially those in the West, will join us for a lively and helpful conference.

See you all there!
Frances Benham, PhD
President