Wednesday, March 25, 2015

XLH Days, past, present and future

In the course of planning the West Coast XLH Day (registration is still open at, but closes at midnight March 30th, and while the event is free, you must register to attend), we've been thinking a lot about past events and the potential for future events.

In the process, we've been compiling a history of XLH Day events, which started in the fall of 2011. We have the basic facts about where and when the events were held, and what programs were offered, but we're missing the personal element, the stories about what it means for our members to attend an XLH Day.

If you've got a story from a prior event to share, we'd love to hear it and possibly add it to the history of XLH Day at the Network's website. You can send your story to gin.jones at xlhnetwork dot org, or post it in the comments to any of the West Coast XLH Day posts at

Meanwhile, here's a taste of the feedback we received the people who attended the Midwest XLH Day last year: "Our daughter is non-XLH and still stays in touch on facebook with XLH kids her age that she met at the 2012 XLH Day. 2012 was the first time our XLH son (and the rest of us) had ever met others with XLH. Before finding the XLH Network we were on our own and felt so lost."

We don't want any XLHer or their families ever to be lost again!

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