President's Message

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As 2009 winds down, we reflect on what has been a busy year. Clearly more who have PXE are being diagnosed, in the U.S. and around the globe. Seldom does a full week pass without contact from those newly diagnosed. Our website is a powerful tool for providing information in terms accessible by lay persons. We plan in 2010 to present an improved website with a special section for those newly diagnosed.   In this issue we present our almost unbelievable problem - keeping up with PXE research literature. We should all be thrilled by such a problem. I am, and share some thoughts about it. We want to be sure everyone knows about new federal law protecting those with genetic disorders. Linda Austin prepared an article with a contact for the law itself.   The Postal Service has changed bulk mailing regulations. We now must discover on our own new rules prior to preparing a mailing. Changes in this issue conform to recent new regulations. And let me acknowledge help in the mail process by Bob Worrell, long time member who with his late wife, Barbara, participated regularly in our annual conferences. Bob and Barb helped us prior to her final illness. We miss her and are grateful to Bob for continuing to help NAPE as a way to honor her.   Best wishes for a wonderful holiday season,   Fran Benham