2009 eNewsletters


Published bimonthly, our eNewsletters keep you up to date on the latest happenings at PXE International.
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December 2009 [Volume 2, No. 5]

  • 2009 Honor Roll of Donors
  • Symposium on PXE (2009) - Budapest, Hungary
  • January 2010 webinar - Own Your PXE
  • Harper's Corner - The Talking Scale
  • GINA Title 1 regulations in effect
  • The FAQ's about genetic counseling
  • Rockbrokers donates $9,000!
  • Pat Terry is Man of the Month
  • What to get those PXEers on your list


November 2009 [Volume 2, No. 4]

  • PXE International receives $100,000 grant from Helmsley Charitable Trust
  • Do other genes influence the severity of PXE?
  • Embrace the change, by Jan Nesset
  • Celebrate PXE International's 15 year anniversary
  • Combined Federal Campaign of the National Capital Area


August 2009 [Volume 2, No. 3]

  • Updates on treatments for retinal bleeding caused by PXE
  • Harper's Corner - Men, Gas, and Measuring Cups
  • Arizona Department of Economic Security: A resource for low vision tools
  • A Word from the Board: Claire Driscoll and Judy Williams
  • PXE meeting reports: PXE Italia, Toronto, Western Australia
  • September 2009 webinar - Do mice have PXE, and why study them?
  • Grocery savings - an easy fundraising idea


May 2009 [Volume 2, No. 2]

  • New research section on website
  • Call for Avastin, Lucentis, or Macugen medical records
  • A word from the Board - Joe Maas
  • July 2009 webinar - Presentation and progression of PXE in children
  • Pennies for PXE


February 2009 [Volume 2, No. 1]

  • Dietary magnesium prevented tissue mineralization in the PXE mouse
  • The FAQ's about calcium
  • Harper's Corner
  • Portal to NIH information on PXE
  • Connie Culhane hired as webmaster
  • Two-part webinar March & April - General Overivew of PXE
  • Regional meetings - would you like to hold one in your area?
  • Elizabeth Terry uses FirstGiving to raise $2,000 for PXE International
  • Annual Appeal giving doubled since December!