PXE eNewsletter December 2019

Matching Challenge By The Numbers

As the year draws to a close, we pause. In this pause we notice we are so grateful for you, for our mission, and for the advances toward treatments for pseudoxanthoma elasticum (PXE). We are excited to enter 2020 and help to shape the future of living with PXE.

In the next 10 days, we need to raise a final $81,000 to meet our two challenges. That is a lot of money. But we have already raised $419,000!! So we can do this! Please donate and ask your friends to do the same. Donate at the link below or by texting “GIVEPXE” to 44-321 to help us complete this challenge before 2019 ends.

MATCHING CHALLENGE THERMOMETER

 

Dr. Jouni Uitto Featured in The Nexus

Last month Dr. Jouni Uitto was featured in Jefferson University publication, “The Nexus” highlighting his incredible journey as a scientist and researcher. Dr. Uitto has done incredible work for the PXE community and continues to do so on a daily basis. He is currently one of the top scientists researching PXE and how to manage its effects on the human body.

DR. JOUNI UITTO AT THOMAS JEFFERSON UNIVERSITY

Sharon Terry, founder and executive director of PXE International, an advocacy organization for a rare disease called pseudoxanthum elasticum (PXE), agrees. “His ability to accept and embrace a patient advocacy group was far ahead of his time,” she says. “Nowit’s fashionable, but ...he really led the way amongst researchers in bringing respect to that kind of work.”

Read the full article on Dr. Uitto’s journey here.

Dr. Jonathan Schoenecker Webinar on Bone Construction

On December 12th we held part one of Dr. Jonathan Schoenecker’s webinar on bone structure and how our bones are affected by PXE. You can watch that webinar below. Stay tuned to register for part two, which will take place early 2020. Let us know what subjects you'd like to see covered on our webinars at scoley@pxe.org

Watch Dr. Schoenecker's Webinar here. Visit our YouTube channel

Order PXE T-Shirts and Double Your Impact!

We still have PXE T-shirts available for sale! Order your PXE International T-shirts before the end of 2019 and your order will be matched in our matching challenge! Thanks to our anonymous donors all orders are now double matched, so your $25 purchase becomes a $75 donation to PXE.

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Order here

 

 

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.