PXE eNewsletter April 2017

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.

CHRIS VOCKE AND ANDREW VOCKE

Andrew had complicated health needs that included a number of disabilities, all due to an undiagnosed condition (or more than one). Chris and her husband Bob, and sons Robbie and Jonathan worked tirelessly to make Andrew's life full.

About a year ago, they launched a fundraising campaign to provide funds to Rosaria Communities Foundation to renovate a home that would become Andrew’s Forever Home. Andrew, his housemate, David M., and a third man would live in the house. Andrew was looking forward to his move, and both families were excited about their young men living in a community in Rosaria Communities home. Generous donors gave $64,947.00 to the project.

Andrew’s death changed so many things.

What has not changed is that the house is being renovated and three men with disabilities will move into their forever home this year.

With a generous grant from Montgomery County and the funds from Chris’ fundraiser, only $40,000 is needed to finish the renovation and provide for unexpected costs. If you wish to remember Andrew and to honor Chris and her family, please make a donation.

New Staff at PXE International!

Samantha Coley is the new Communications Assistant and Outreach Coordinator at PXE International. Samantha graduated from the University of North Carolina, Charlotte in 2015 with a bachelor’s degree in Communications Studies. She started working for PXE International at the end of February to help people navigate the complexities of our PXE & LIFE survey and engage the community in new and exciting research opportunities. Sam will also send frequent updates to the PXE community via social media and email. She's excited to engage with the community and learn more!

SAMANTHA COLEY

Contact her here: scoley@pxe.org or (202)966-5557 ext. 222

PXE & LIFE

We are currently running a survey about PXE that will help us better understand how PXE affects individuals. Because it affects everyone so differently it's very difficult to predict on the individual level! Doing research on PXE without all PXEers is like trying to complete a puzzle with missing pieces - you can't see the whole picture! You have something unique to contribute and we need your piece of the puzzle! The goal of PXE & LIFE is to collect as much data as possible on every person living with PXE. If everyone completes PXE & LIFE, we may find new connections that could help us find new and more effective treatments.

PXE AND LIFE GRAPHIC

Nearly 75% of people first notice a change in the skin on their neck before they are diagnosed with PXE. Was the same true for you? Share your experience with us by taking our PXE & LIFE survey! Samantha is available to help via phone or email!

Contact her here: scoley@pxe.org or (202)966-5557 ext. 222

Have you seen an eye doctor? Donate your medical records to help others!

We are compiling medical records from your ophthalmologist or retinologist for an upcoming study. All you have to do is complete our one-page request form and send it to your doctor's office!

If you have any questions, please email Eliza at eduvall@pxe.org.

PXE LAB: Transform your ideas into study projects!

Thank you so much for your participation in PXE LAB! We are thrilled to see such a great response from caregivers, families, researchers, and the PXE community. We are planning to launch the next phase very soon! If you have any further thoughts or ideas, please share them with us today!

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.