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PXE eNewsletter February 2018

February - What We Love: Staying Active!

Through PXE LAB, Facebook, and email, many of you expressed interest in understanding your leg pain better. Those calf cramps often felt by people with PXE when exercising? That's called intermittent claudication. Intermittent claudication is one symptom almost everyone with PXE experiences, but it's not yet been widely studied.

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.