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PXE eNewsletter January 2020

Thank You for Helping Us Raise Over $1,000,000

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!!!

PXE eNewsletter - Supplemental - Happy New Year 2020

We are going to do it! Thank you all!

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!

PXE eNewsletter August 2019

PXE International Breaks Ground on Exciting Clinical Study

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).

PXE eNewsletter January 2019

HAPPY NEW YEAR FROM PXE INTERNATIONAL!

Matching Challenge Update!

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!

PXE eNewsletter August 2018

PXE Member Conference Scholarships Available

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.

PXE eNewsletter April 2018

PXE INTERNATIONAL LONDON MEETING On the evening of April 12, more than 50 people gathered in London for a PXE meeting. In addition to those assembled another dozen people connected through streaming conference technology joined the meeting from their home. At the start of the meeting, each person shared their name, their relationship to PXE, and where they were from. As each person said “I have PXE” or “I am the relative of someone affected by PXE” the room seemed to fill with a new norm: The majority of people have PXE. A few have a loved one with PXE. What a novel experience for most people! Smiles ran around the room from face to face as the participants realized they were ‘average’ and ‘ordinary’ in this crowd. Sharon Terry presented current information about PXE and then answered many questions. Folks gathered by interest and then geographically. Sharon publicly thanked Al Ditheridge for all of his fabulous fundraising for PXE International. Al announced that his son Chad’s school (Chad has PXE) just raised $1400 for PXE research and his son Evan’s raised £240! ​People had an opportunity to donate saliva for research at the meeting, Erin Oliphant, PXE International research manager ably handled the logistics; whilst Elizabeth Terry managed all of the personal questions and registration issues.

If this information was helpful to you, please consider making a quick donation today because every penny counts. 100% of donations go to support and research.