President's Letter

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Dear Friends,

The Los Angeles conference in mid-July started as a celebration of the over thirty years of PXE patient care and research by Dr. Kenneth Neldner. His three daughters surprised him at Friday's reception to begin the celebration. Please read the story in this issue. If you would like to add to his PXE Memory Book, please send a card, letter or photo to the NAPE Office for forwarding to Dr. Neldner.

We were delighted to welcome Dr. Berthold Struk after a long absence. Dr. Struk cares for cardiology patients half-time and conducts research during the remaining half at the Franz-Volhard Clinic for Cardiovascular Disease and Max-Delbruck Center for Molecular Medicine in Berlin, Germany. His program on the care of PXE patients was focused on information one can use with one's own physician. He also discussed his most recently published research on the inheritance of PXE. Please see the abstract of the article in this issue. Participants received his guidance with enthusiasm and reported on his willingness to interact with individuals regarding their situations.


Dr. David Sarraf (right) of UCLA School of Medicine discussed eye implications and the range of treatments which have recently come onstream. Marie Dufour (below left), RD, Nutritionist, described the new food pyramid, how to use it and how to obtain an individualized copy online. Dr. Neldner gave a basic review of PXE. Their presentations, as received, will be posted on NAPE's website (www.napxe.org). There are several basic PXE articles by Dr. Neldner on the website. They were published in earlier issues of PXE Awareness.


We continue to improve our website with natural voice audible access. It was pleasing to hear from conference participants that audible access has been an improvement for them. We intend for all website articles, Q's and A's and other information to be made audible.

NAPE has not requested donations from members in several years. We are grateful to those who send a check each year. Most members have not given recently. We will never fail to provide services to anyone with PXE, but we request of those who are able to use the enclosed donation envelope. Almost all of NAPE's work is provided by volunteers, but we have expenses related to rent, equipment, printing, postage, the newsletter, the website, and telephone and email support services. As well, we have the typical requirements of non-profit organizations, including annual audits, financial planning, budget management, and tax reporting. Please help as you are able.

We hope the holiday season is bringing you great joy and that the coming year will be especially rewarding. We hope many of you may be able to join us at our next conference, which will be announced in the next issue of PXE Awareness early in 2006.

Happy Holidays!
Frances Benham, PhD
President