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eNews January 2012

January 31, 2012
Volume 5, No. 1

Let's Get Healthy!
PXE International Health Challenge

We all know that the best way to prevent disease is to be healthy. It is no different in PXE. We, as affected individuals, know that PXE affects people in different ways. We have not yet found how the 390 individual genetic mutations link to the severity of the symptoms, or how environment or lifestyle choices may contribute to the progression or mitigation of PXE symptoms. But just like in other diseases, people who are a healthy weight and body fat percentage, as well as those who do not smoke and who exercise regularly, tend not only to live longer but to also express disease symptoms to a lesser degree. So like everyone else, we’re going to tell you – Let’s get healthy!

The PXE International Health Challenge will help you do that! We’ll give you some tools and tips, AND inject some healthy competition! We will be putting out monthly video challenges that will encourage all of us to set goals and get healthy. As we all advance through these goals, we'll be each other's support system as well as doing our best to be the best. And once we've all gone through this Health Challenge year together, one dedicated person will be our Grand Prize Winner of $1000!

  1. If you haven't already, join our Facebook group
  2. Add yourself to the Health Challenge event
  3. Post your 'Before' pictures or tell us about what you want to change to be more healthy, and keep us updated on your highs and lows!
  4. Keep checking your Facebook for each monthly challenge video.

Let's get moving!

More info
Health Challenge Intro Video

Do You Have a Child with PXE?

Don’t miss our webinar at Noon EST tomorrow!
Wednesday, February 1, 2012

PXE and Your Child
With pediatrician, clinical geneticist and PXE researcher Dr. Olivier Vanakker

Read an interview with Dr. Vanakker, who did his doctoral work on PXE.


A Sharp Stick in the Eye

"I took a dubious train ride to Connecticut, and gave my anxious parents some good news about the scary medical procedure many of us face."

Read Jessica's article.




2011 Annual Report

The PXE International Annual Report outlines many of the milestones reached by the organization each year, as well as sets goals for the upcoming year. We invite you to read this year’s annual report, and join us as we strive to make phenomenal progress in the upcoming year.

2011 Annual Report

Last modified: 09/25/2013