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 email@example.com. Follow Claire on Instagram here.
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?
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 firstname.lastname@example.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!
- Washington, D.C. 10/26/2017
- San Francisco, CA 12/07/2017
- Nashville, TN 12/21/2017
- Cincinnati, OH 03/22/2018
In addition, there will be an international PXE community meeting in the Fall of 2018 near Washington, D.C.
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!