President's Letter

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Dear NAPE Friends,

The NAPE website began its expansion in terms of information content in 2002. Prior to that time, there were few pages on the website. Our newsletter was not online. In 2002, we scanned articles from our newsletter collection and added them permanently to the website. We did the same with our popular Q&A section. Since then we have added all new articles and Q&A's. We next began to record in audible natural voice current issues so that those who have trouble reading print can tap into the website and listen to the newsletter read to them.

In 2001 we had perhaps two inquiries per month, most via letter or telephone. Gradually we began to receive most such contacts by email as members and persons newly diagnosed found us on the internet. Today we are receiving an average of five contacts per week, most of which come to us via email from people all over the world.

We respond to each request for information, most requiring three to five interactions on the web or telephone. We are excited about these improvements as they clearly are helping us fulfill our mission to education PXE patients and their families.

We invite you to visit our website (www.napxe.org) if you have not yet done so. We hope many of you will begin to listen to or to read our newsletter on the internet. We have no plan to eliminate any of the material once it is loaded on the website. Thus you do not need to retain copies as you can use our website as your NAPE library.

In the office we are busy with final preparations for our September conference. Most of those who will attend it will be from the Midwest and Upper Midwest. This will provide them an opportunity to meet and share experiences with others nearby who live with PXE. We hope you will join us. Next year, we plan to meet somewhere in the southeastern part of the United States. We will announce that site at Detroit.

We hope that you are finding the information we provide helpful. Please feel free to contact us with questions or suggestions so that we can improve services. See you in Detroit.

Hope to see you in Detroit!

Frances Benham, PhD
President