pxe meeting

PXE eNewsletter January 2018

PXE International 2018 Goals

In 2018, PXE International will build new bridges within the PXE community by hosting several virtual meetings and a few conferences. We are also in the planning stages of clinical trials that will explore potential treatments for the symptoms of PXE!

Save the date! We are excited to announce our next BIG PXE meeting for you, your families, and friends to learn about PXE, and to network with others!

PXE eNewsletter January 2016

Thank you for an Amazing Year!

2015 has been filled with great achievements and a good bit of excitement for the future. PXE International is thankful to all of you for your generosity through your contributions. We are so grateful to board member Jessica Harper and her husband Tom Rothman, as well as board member JoeMaas and his wife Robin for their matching donation challenges.

PXE eNewsletter August 2017

Claire's Cupcakes!

Meet Claire Auth, an inspiring young lady who's been baking and selling cupcakes to raise money and awareness for PXE!

So far Claire has raised over $200 in donations for PXE! Claire's sister has PXE and this cause is close to her heart. What started as a Christmas promise to her sister has become a great force for raising awareness about PXE! We are so proud of you, Claire!

You can contact Claire at clairescupcakespxe@gmail.com. Follow Claire on Instagram here

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.