PXE International Regional Meeting in London, England

 


OCTOBER 2, 2011
PXE International Regional Meeting in London, England


On Sunday October 2nd, PXE International held a regional meeting in London, England. It was presented by Executive Director, Elizabeth Terry and attended by about 30 PXEers and their family. Although there were several technical difficulties leading to the power point presentation not being shown, information about the genetics, symptoms, and treatments of PXE was presented and discussed. Many important questions were asked and discussion of local resources occurred among participants.

It is always obvious at these events that the PXE community is full of energy and dedication to educate people about PXE as well as further the pursuit of wellness. Individuals ranged from minorly affected to extreme vision loss. As always the most important impact, besides the dispensation of information, is the sense of community and the knowledge that no one is alone in this struggle.

The International portion of our name as an organization has always been incredibly important in our mission. For example, the vast majority of our research pursuits occur outside the US and we do our best to serve an international community. This is obviously extremely difficult to do on our very small budget for meetings of this nature. Elizabeth came away from the meeting with a renewed sense of the importance of our support structure internationally and plans to pursue much more dedicated international support.