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 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!
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
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 firstname.lastname@example.org. Follow Claire on Instagram here.
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.
Center of Excellence
These moments come only once in the life of a foundation, and we have a big one!! PXE International is very excited to announce the inauguration of our Center of Excellence in Research and Clinical Care at Jefferson Medical College!
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.