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.

sharon terry at the london meeting

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.

london meeting attendees

PXE INTERNATIONAL'S OFFICE HOURS

We held the first office hours meeting on April 10th, but if you missed it don't worry, we're having them every month! These meetings will be similar to the Virtual Meetings that PXE International hosted earlier this year.

This is an opportunity for you to connect with other PXEers around the world and to speak with team members here at PXE International who can answer your questions.

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The next office hours meeting will be held on May 7th at 9 pm EST. You can register for it here:

Register for May's office hours

For more information email us at info@pxe.org or watch our Facebook and Twitter for each month's announced office hours.

PXE & LIFE

Help us further PXE Research by taking our PXE & LIFE survey. Get started on our website by clicking the button below. If you'd like assistance please contact Sam Coley via email at scoley@pxe.org or call 202.362.9599 ext. 222

2018 MEETING REMINDER AND UPDATES

Registration for the 2018 Biennial Member Conference in Philadelphia, PA is now open! Below you can register to join us for the meeting. We'll be posting the agenda soon, we can't wait to see you there!

Register Here

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THANK YOU!

Helen Seaman asked for donations for her recent birthday and raised over $800 for PXE International. Thank you so much to Helen and her friends! Learn how to use Facebook to host your own fundraiser for PXE International by clicking the button below.

Create a Facebook Fundraiser

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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.