First PXE Regional Meeting of 2011 a Great Success


FEBRUARY 24, 2011
First PXE Regional Meeting of 2011 a Great Success
For some PXEers, this was the first time they had met another person with PXE.


PXE International's first regional meeting of 2011 was a great success. Held February 23 in Irvine, CA, speaker Sharon Terry was very grateful to Private Access, a small patient-centric start up company, for the use of one of their conference rooms for the evening event. Though the meeting was announced only two weeks prior, seven affected individuals and their loved ones attended. All told, twelve individuals and one tiny baby met each other and learned about PXE. For some PXEers, this was the first time they had met another person with PXE. That is always an amazing experience, even for those observing.

Tying these meetings to her travel for the various committees and work groups on which Sharon serves has allowed PXE International to put together an impressive array of regional meetings for the year. "I am always really moved by the eagerness of our members to hear the latest news on PXE," said Sharon. "I present a 90 minute overview of PXE, and the participants ask such good questions. These wonderful people are clearly very interested and knowledgeable about their condition." At the close of the meeting, Jim Risher gave the group a stirring appeal beseeching all to pitch in however we can, to the best of our ability. He said, "PXE International has set a bold goal of trying to raise the millions of dollars needed to push forward the research. Let's dig in and help as much as we can!"

While small, these events are both fun and informative. Check out our Regional Meetings page to see if PXE International is coming to a city near you!