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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 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 December 2017

Happy New Year!

Yes, it is the end of the year. We are most grateful for the opportunity to serve you another year. Please make a donation to support our work if you have not done so already – we need your help. Add us to your year-end donations.

Happy New Year,

The Staff: Sharon, Chris, Mary, Elizabeth, Erin, Eliza, Ian, Sam 

The Board: Pat, Lionel, Jessica, Joe, Kathy, Barb, Judy

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 April 2017

Remembering Andrew Vocke

PXE International is first and foremost a community. All members of the community give life and color to this community, and we stand with each other in good times and bad, in health and diseases, in life and death.

We are very sad to let our community know that Andrew Vocke, the son of our dear friend and colleague, Chris Vocke (Director of Participant Engagement), died unexpectedly on December 23, 2016. Chris has worked with PXE International almost since our founding. The Vocke and Terry children grew up together.

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.

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.