Wednesday, September 17, 2014

A different kind of challenge

Since the Network's inception in 1996, the members have talked a lot about our medical challenges and experiences, but now we'd like to expand the conversation to get a better idea of what our lives look like. Toward that end, we're challenging you to take a picture (or three) that reflects the theme of "What XLH means to me."

Before you start focusing your camera, take a minute to reflect on the wide range of the XLH experience. It's an unfortunate fact that many XLH patients (and their caretakers) spend more than their fair share of time in medical and dental offices, but there's so much more to our lives than those experiences. An XLH child competing on the swim team, winning a ribbon at a science fair or rebuilding a car engine is every bit as much a part of the XLH life as the doctors' visits. Sure, sometimes there are tears, but other times there's laughter, or at least determination and courage, in the face of challenges. No one thing defines us all, or captures every moment of our lives. So, let's see the diversity of what XLH looks like!

We'll collect the pictures for the next six weeks or so (until November 1st), and then share the very best ones with the our global community in December.

We're particularly excited to have a talented guest judge, Laura Hensser, who will choose those very best pictures after the board of directors has narrowed down the submissions to a manageable number. Laura Hensser is a photographer and a Curatorial Project Assistant with London's Tate Modern. She has a Masters of Curation from the Chelsea School of Art in London.

If you'd like to participate in this challenge,  there are just three things to remember:

1. You  have to be a member of the Network (or the child of an adult member) to participate.

2. You can submit up to three pictures per member by sending the digital files to In the subject line of the email, please indicate either: "challenge, adult" or "challenge, minor."

3. Some pictures may be chosen for promotional use by the Network, so we'll need to have a written release from you. Along with the picture file(s), please attach a PDF file of the signed photo release (parents/guardians must sign for anyone under the age of 18). We'll have the download link soon. If you can't scan the signed release to send it back as a digital attachment, you can print the form, sign it and mail it to our headquarters: 911 Central Ave. #161, Albany, NY 12206.

If you have any questions that aren't addressed here, please post them to the listserv, so everyone can see our answers.

We can't wait to see your pictures!

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