You spoke, we listened. Let’s get to work!

A message from Sharon!

Hi, Friends! Welcome to PXE LAB, a platform where we will work together to ask and answer questions about PXE and nutrition/exercise. For starters, answer this question: What nutrition and exercise choices do you think make a difference as you live with PXE? We need you to share your ideas so we can hone in on the most important questions for you. Here at PXE LAB, you can comment, ‘like’, and share ideas. Join the discussion now!


What is PXE LAB?

PXE International promotes research driven by, and centered on, people affected by PXE. PXE LAB is a forum for PXEers and researchers to brainstorm, collaborate, and develop a study on nutrition and exercise.


Why focus on nutrition and exercise?

PXEers gathered last year to talk about questions they wanted answered about PXE. PXE International compiled these questions and asked everyone in the community to tell us what was most important to them. You decided it was most important to know the answers to these questions: (click on each question to learn more!)

PXE International shared these results with you in a flier you can view by clicking here . The topic for PXE LAB, nutrition and exercise, came from all of your voices!


How does PXE LAB work?

1. Share Ideas: What’s most important for PXE research? PXE LAB is open to anyone willing to help develop a question regarding Nutrition and Exercise that we can test. PXE LAB also allows participants to “like” other comments. We want everyone’s voice to be heard!

2. Develop a Research Team: The Research Team will consist of PXE scientists, PXE International staff, and those affected by PXE: this could be anyone from the PXE community! The Research Team’s goal is to engage the PXE community, work out logistics, conduct, and complete research. Are you interested in being part of the Research Team?  Please email Eliza [eduvall@pxe.org].

3. Collect Data: The Research Team will determine methods to collect data based on suggestions from this discussion. We might do surveys, suggest self-tracking devices for exercise, or offer trackers for logging your eating habits. We need EVERYONE to participate for stronger and more accurate results.

4. Analyze Data: The Research Team will work together to analyze the data collected by using statistical methods. The Research Team will conclude if any correlation exists between PXE and Nutrition and Exercise.

5. Share Results: The Research Team will summarize the results of PXE LAB and share them with the entire PXE Community!


To join the conversation, visit our Discussion Page!