NAPE Board members met in Baltimore during last July's annual conference.  Agreement was easily reached on the importance of NAPE's mission to serve the needs of PXE patients for information and support.  Primary vehicles for achieving this goal are our newsletter, website, annual conference and personal interaction via telephone, email and letters.  Each of these areas was discussed.

Our newsletter generated the most interest.  It was generally agreed that it should focus on specific information related to PXE.  We are inundated with general health information on television, the news and in popular magazines.  Articles that are specific to PXE will be more difficult to find, but they also will be more valuable to our members.  This issue is our first attempt to meet this goal, and we welcome your comments about it and about the Boardπs thinking on this matter.

NAPE's website has become more important as we have added many articles from previous newsletters to it along with many Q & A's from the newsletter.  Most of our new contacts and new members result from the website.  Sally Dawoud, Board member and engineer, agreed to manage the website.  She plans to provide sound recording for the content loaded so that those who have added speakers to their computers can have items on the website read to them.  If you do not have speakers on your computer you may want to add them as it can save much effort for those of us who struggle with reading print.  Sally also plans to load each new issue of the newsletter directly on the website.

Contact with members and others seeking information will be shared in the future by Board members, the office and by PXE Pals.  After much discussion it was decided not to create an online chat room but to rely on personal contacts for those in search of information and assistance.

Some years ago it was decided to move the annual conference around the country so that members in different geographic regions could attend.  Most participation each year is by those who live reasonably near the conference site.  The conference typically has been in July.  Whether this is the best time was considered.  This year's conference will be in November (the 12^th and 13^th) in Kansas City.  Next year's meeting is planned for California with the date not yet determined.  Concern was voiced that speakers be chosen who can address issues of most urgency to PXE patients.  Again it was agreed that general health information is widely available and valuable conference time should be used to address specific PXE concerns.

The duties of each Board member and officer were discussed, and it was decided that the Board should meet in St. Louis before the next conference to reflect on this matter and to plan for the future.

The Board met in St. Louis in June.  Members again confirmed the importance of NAPE in providing support for those with PXE.  Our mission statement, printed on the inside cover of each issue of PXE Awareness was also reconfirmed. 

The Board reviewed the role of Board members and officers.  It was decided to combine the role of director and president.  Officer appointments were agreed to and are posted on the inside cover of this issue.  A vote of appreciation was extended to Carol Daugherty who resigned from the Board after many years of service.  Carol will be greatly missed as colleague and friend and also as our secretary and conference photographer for many years.

Claudia McCallister was named to head the Finance Committee to focus on investment of NAPE funds.  Thanks to Claudia and her PGA golfing husband, Blaine, NAPE enjoys a most fortunate financial position.  Claudia announced a $5,000 gift by Patrick Locke, a Three Amigos supporter and friend.  NAPE is deeply grateful to the McCallisters' marvelous generosity as well as to that of Mr. Locke.

Other members of the Finance Committee are Jane Tipton, Treasurer; Jean Feeney and Rosemary Atallian.

Board members developed procedures for improved response to those seeking information.  It is hoped and expected that anyone who requests information will receive a quick and helpful response.

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