This article first appeared in the October 2010 eNewsletter.
Updated 09/15/2020
Since its founding in 1995, PXE International has been a catalyst in just about all research on pseudoxanthoma elasticum (PXE). When the Terry’s children were diagnosed in 1994, it was immediately clear to them that there was a need to bring the community together around one goal - finding a way to mitigate the suffering endured by people affected by PXE.
Dear friends and supporters of PXE International,
We are so thrilled with the results of our matching campaign. First, we thank our anonymous $500,000 donor. I cried when they first offered this challenge. My second emotion was fear – how could we possibly do this? We generally raise $100,000 in a year! Well, YOU did it! I would love for each of you to look in the mirror, and as my 2-year-old granddaughter is want to say these days, feel your whole self from head to toe and proclaim: I DID IT!!!
Tonight, all over the world, people pause to acknowledge the end of the year.
We pause to thank you. This year, given the challenge of raising $500,000 for a match, we celebrate that we are within $4,500 of that goal!
Help us get over the finish line.
Donate at the link below or by texting “GIVEPXE” to 44-321 to help us complete this challenge before 2019 ends. Challenge your friends to do the same!
As the year draws to a close, we pause. In this pause we notice we are so grateful for you, for our mission, and for the advances toward treatments for pseudoxanthoma elasticum (PXE). We are excited to enter 2020 and help to shape the future of living with PXE.
On August 6th PXE International conducted a clinical study to see if people affected by PXE experienced increased levels of pyrophosphate (PPi) in their blood if they took capsules containing PPi.
PPi might be a treatment for PXE, so this is an important first step. We had a magnificent day with 11 volunteers who gave their time (and blood) to this study!
Researchers Drs. Jouni Uitto and Qiaoli Li also participated in the day (pictured below).
Your donation is doubled this year!
In just a few weeks Sam Harper and Mike Romanow are setting off on their next bike trip to raise money and awareness for PXE research!
An anonymous donor challenged PXE International to raise $500,000 this year and promised to match it. Every donation counts double thanks to our anonymous donor. We're currently at $316,117.83 from over 250 donors; you guys are amazing!
Share this challenge with your friends and family, and on social media to help PXE International reach this goal!
PXE-ers are killing it in our matching challenge in just a few short months! An anonymous donor challenged PXE International to raise $500,000 this year and promised to match it. So far we have received $309,160 from nearly 250 donors! Share this challenge with your friends and family, help us push PXE International to reach this goal by doubling your impact and having your donation matched!
We are happy to announce the 2019 Webinar schedule!
Thanks to a generous donor we are able to provide a few scholarships to the PXE International 2018 Member Conference. These scholarships can be used to pay the registration fee. If you are interested in receiving one please send an email to sterry@pxe.org answering the following:
1. Why are you interested in the meeting (for yourself, a loved one)?
2. Assurance that you can get to Philadelphia, and book and pay for your lodging there.
3. Why you have financial needs at this time.