enewsletter

Thank You for Helping Us Raise Over $1,000,000

Dear friends and supporters of PXE International,

We are so thrilled with the results of our matching campaign. First, we thank our anonymous $500,000 donor. I cried when they first offered this challenge. My second emotion was fear – how could we possibly do this? We generally raise $100,000 in a year! Well, YOU did it! I would love for each of you to look in the mirror, and as my 2-year-old granddaughter is want to say these days, feel your whole self from head to toe and proclaim: I DID IT!!!

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

Claire's Cupcakes!

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 clairescupcakespxe@gmail.com. Follow Claire on Instagram here. 

PXE Member Conference Scholarships Available

Thanks to a generous donor we are able to provide a few scholarships to the PXE International 2018 Member Conference. These scholarships can be used to pay the registration fee. If you are interested in receiving one please send an email to sterry@pxe.org answering the following:

1. Why are you interested in the meeting (for yourself, a loved one)?
2. Assurance that you can get to Philadelphia, and book and pay for your lodging there.
3. Why you have financial needs at this time.

Sam & Mike Launch "50 by 70" Biking Series for PXE Research 

Your donation is doubled this year!

In just a few weeks Sam Harper and Mike Romanow are setting off on their next bike trip to raise money and awareness for PXE research!

PXE INTERNATIONAL LONDON MEETING On the evening of April 12, more than 50 people gathered in London for a PXE meeting. In addition to those assembled another dozen people connected through streaming conference technology joined the meeting from their home. At the start of the meeting, each person shared their name, their relationship to PXE, and where they were from. As each person said “I have PXE” or “I am the relative of someone affected by PXE” the room seemed to fill with a new norm: The majority of people have PXE. A few have a loved one with PXE. What a novel experience for most people! Smiles ran around the room from face to face as the participants realized they were ‘average’ and ‘ordinary’ in this crowd. Sharon Terry presented current information about PXE and then answered many questions. Folks gathered by interest and then geographically. Sharon publicly thanked Al Ditheridge for all of his fabulous fundraising for PXE International. Al announced that his son Chad’s school (Chad has PXE) just raised $1400 for PXE research and his son Evan’s raised £240! ​People had an opportunity to donate saliva for research at the meeting, Erin Oliphant, PXE International research manager ably handled the logistics; whilst Elizabeth Terry managed all of the personal questions and registration issues.

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.