2013 eNewsletters


Published monthly, our eNewsletters keep you up to date on the latest happenings at PXE International.
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Explore the eNewsletter archives: 2014 • 2012 • 2011 • 2010 • 2009 • 2008
 



November 4, 2013 [Volume 6, No. 9]

  • PXE Research Meeting held in Budapest, September 2013 
  • Interview with Yale student, Alex Borsa
  • DNA sequencing: From the past to the Next Generation
  • September and October 2013 webinars now available
  • NEI Audacious Goal chosen

 



September 23, 2013 [Volume 6, No. 8]

  • What's happening in PXE Research? New webinar October 29
  • What's Worse?, by Jessica Harper
  • The Common Thread in Kirk's Life, by PXEer Kim Griffiths
  • CFCNCA - Select PXE International #95502
  • Meet our new interns

 



August 1, 2013 [Volume 6, No. 7]

  • Update on gene patenting in the USA
  • New webinar! What role do modifier genes and biomarkers play in PXE?
  • Standing Ovation, by Linda Falconiero
  • First IRDiRC conference publishes conference report and policy guidelines
  • Join together to divide and conquer! Would you raise $160 for PXE Research?

 



June 28, 2013 [Volume 6, No. 6]

  • Summary of the 2012 PXE Research Meeting
  • Curling - Tammy's Way, by Kim Griffiths
  • I'm in Love with an Acrobat, by Jessica Harper
  • PXE International - Trailblazing for a Cure, by Erica Rascon for The Balance Sheet
  • Where Does Your Money Go?

 



May 31, 2013 [Volume 6, No. 5]

  • Press Release: Announcing a Clinical Trial of Magnesium Supplementation for the Treatment of Pseudoxanthoma Elasticum (PXE)
  • Making History of PXE: Elizabeth Terry's experience of the PXE clinical trial
  • Interviews with the Clinical Trial Team
  • Clinical Trial FAQ
  • Magnesium and Dietary Supplements
  • Progress Report

 



April 30, 2013 [Volume 6, No. 4]

  • Warfarin accelerates mineralization in PXE knockout mice
  • New webinar! "What is the mutated PXE-associated protein doing (or not doing) in the liver, and can we fix it?
  • IRDiRC meeting in Dublin April 16 & 17 seeks 200 treatments for rare diseases by 2020
  • Audacious Goals Initiative - NEI holds historic "do-it-yourself" development meeting
  • Hurdles to Successful Fundraising, and How to Jump Them

 



March 28, 2013 [Volume 6, No. 3]

  • Plans underway to expand access to federally-funded research results
  • More Books for PXEers, by Pat Manson
  • Audiobook Services: Something for Everyone, by Alan Lemly
  • Old Passions, New Goals: Figure Skating Success, by Rachel Koren

 



February 26, 2013 [Volume 6, No. 2]

  • Stem cell therapy experiments in the PXE mouse
  • 2012 Annual Report
  • Flu Flyers, by Jessica Harper
  • 2012 Health Challenge winners
  • 6th International Rare Disease Day is February 28

 



January 30, 2013 [Volume 6, No. 1]

  • Congratulations to Sharon Terry, Jouni Uitto, and all Rare Disease Heroes!
  • Do you have a child with PXE? We need you for a research study!
  • Yardi Systems awards PXE International grant of $25,000
  • PXE International Research Coordinator, Abbie Moore, named Genetic Alliance Registry and BioBank Manager
  • Spain's government declares 2013 the Spanish Year of Rare Diseases