President's Letter

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Dear Friends,

NAPE's annual meeting at the Radisson Kansas City Airport Hotel on November 12 and 13 was very successful according to participant evaluations and our own interactions and observations. It was good to greet old friends from across the nation and Canada and a very special pleasure to welcome new friends from the Midwestern United States.

Dr. Kenneth Neldner provided a brief history of NAPE, presented several ideas for our organizational structure, and updated us about popular herbal supplements which may cause increased blood pressure and internal bleeding. He reported on the importance of reading nutrition labels on processed foods such as baked and fried foods. Calcium, fats, vitamins and the role of exercise were shared. The questions regarding nutrition and routine personal care reminded long-term members of the importance of NAPE's educational mission until the cure for PXE is available.

Dr. Gregory reported on stem cell research and its potential. Many questions followed and Dr. Clark agreed to follow the rapid developments in stem cell work and to keep us informed. His talk is presented in this issue.

R.N. Mary Krieger provided talks on two problems about which NAPE receives many inquiries: difficult swallowing and intermittent claudication. NAPE members shared coping strategies and raised many questions. Articles about both issues can be found in this issue.

Rosemary Atallian and Frances Benham updated their experiences with feeder vessel treatment. Rosemary continues to enjoy excellent vision three years after treatment that was provided very quickly after bleeding was detected in her eye. Frances' eyes are now stable after a year of treatment initiated after several months of bleeding. Her vision has gradually improved, but she still reads only with magnification.

Deborah Clark followed with a report on a study underway regarding possible reduction of calcium in the tissue of those who have PXE. A report will be included in a forthcoming newsletter.

Sally Dawoud demonstrated a new feature in preparation for the NAPE website. This is the addition of natural human speech which reads items found on the website so that readers who have a computer with speakers can listen to website information. The most current newsletter was recorded and soon will be available to website readers. Board member Claudia McCallister called for a vote of those present as to their preference for an audible newsletter issue over a print copy. The vote was decisive in favor of audible access. The newsletter will continue to be made available both in print and audibly as the Board considers how best to meet individual NAPE member needs.

Finally, the Board met immediately prior to the conference and after the conference ended to hold its annual Business Meeting. The Board has become quite active and it is listening to NAPE members for program and article ideas which help us cope best with our PXE. The Board invited Linda Zeug and Ron Dore to join for three year terms. Planning for next summer's annual meeting is underway and will be announced early in 2005.

From the Board, I wish you a joyful holiday season. Have a wonderful time and remember that it is alright to splurge occasionally - so enjoy those holiday goodies! Then, back to the veggies, fruit, and daily exercise.

- Frances Benham, PhD