eNews January 2014

January 31, 2014
Volume 7, No. 1


Thank you for your generous support!

Throughout 2013, the PXE community has shown tremendous support for PXE Research, and we are humbled by everyone's contributions. There were many creative givers! One PXEer held a silent auction on her private Facebook page, and raised $390 in response to our Join Together to Divide and Conquer challenge in August. Others in the community gave of their time - writing articles for this eNewsletter, counseling other PXEers going through tough times. And there is that totally unique group of PXEers who have given their time and resources (and bodily fluids!) to participate in the first-ever PXE clinical rial, testing magnesium supplementation as a treatment for PXE. Faithful supporter, Yardi Systems, once again awarded PXE International a generous one-year grant of $25,000 to support PXE Research. The annual appeal at the close of 2013 was a grand display of your giving spirit. Two matching grants, one for $1000 (anonymous) and one for $2500 (Kemp Battle), were posted to social media and the email listserv, and readily matched. Thank you so much to all who gave.

The 15th Anniversary Challenge, launched at the 2010 Biennial Conference, boldly set out to raise $1.5 million dollars in 5 years. Because of your generosity, the pledges received to date total almost $1 million dollars! This is an amazing feat, and makes us here at PXE International even more determined to serve you better in 2014. Let's move this thermometer to the goal by the 20th anniversary meeting in 2015!

Donate today.



Thank you to all from the PXE community who submitted an application to host a Networking PXEers Meeting in 2014. PXE International has chosen the following locations to host these intimate one-day gatherings: Los Angeles, CA; Waltham, MA; New York, NY; Cincinnati, OH; Pryor, OK; and Washington, DC. A few other locations are pending. Specific dates and locations will be published in a future eNewsletter and online registration will be available on pxe.org. Or - you may get an email or a call from a host asking if you would like to take advantage of this rare opportunity to gather with members of the community that are closer than you think!. If you have questions, please email Terry Mac Dermaid.

We'll see you soon!

Join in the PXE Chat

Were you a member of the PXE Chat email discussion group and haven't heard from your PXE Chat friends in a while? Well, there may be a good reason for that. The old server hosting the chat group crashed, and so did the group. So we've recreated PXE chat on Google Groups.

PXE Chat is an optional, closed email discussion group, a place to virtually pull up a chair and chat - about PXE or anything else that is important to you. PXE Chat is open to anyone registered with PXE International, including individuals with PXE, their families, friends or doctors. Your posts on PXE Chat are protected and private, open only to members approved by the PXE International Administrator.

To all PXE Chat alumni or newbies, to join PXE Chat please email Christine Vocke. Include your first and last name and a valid email address, and enter "PXE Chat" in the subject line.

Happy PXE Chatting!


Rare Disease Day, February 28, 2014
Join Together for Better Care

Rare Disease Day presents an international opportunity to raise awareness of rare diseases and their impact on individuals and their families, and on those providing their care. The theme for 2014 - Join Together for Better Care - sends a strong message of hope to millions of rare disease sufferers who can break their isolation through a vast, united international network of solidarity. Find out how you can get involved!

Let your voice be heard - Share your story, photo or video
National Insitutes of Health activities - NIH's 7th Annual Rare Disease Day
Check out these events worldwide