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

Claire Auth and her cupcake creationscupcakes
veggie vegan study banner

We're working on three PXE centered research studies this summer and need your expertise! In one of our research projects we are studying eating habits and PXE, and we want to hear from you!

  • Have you ever been a vegetarian or vegan?
  • What type of food do you eat?
  • How do you think your eating habits impacted your PXE symptoms?

Let us know what you think at PXE LAB!

Have you started our survey yet?

Over 170 people are currently participating in our PXE & LIFE survey! Have you started yet? Share your experience and expertise by answering the survey!

If you need any assistance please contact our Communications Assistant, Sam Coley: via email at scoley@pxe.org or via telephone 202.362.9599 ext. 222

Take the survey here

Upcoming PXE Regional Meetings

We are excited to host regional meetings for people affected by PXE in the coming months! We hope to see you there!

  1. Washington, D.C. 10/26/2017
  2. San Francisco, CA 12/07/2017
  3. Nashville, TN 12/21/2017
  4. Cincinnati, OH 03/22/2018

In addition, there will be an international PXE community meeting in the Fall of 2018 near Washington, D.C.

regional meetings graphic

PXE.org is getting a makeover!

We've heard your concerns! We are currently in the process of overhauling ourwebsite to make it more user friendly!

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.