President's message

The Network’s Board of Directors held its annual in-person meeting the first weekend of August this year, and while words are inadequate to convey the degree of dedication, excitement and anticipation in the air, I can give you a taste of the projects we’re currently working on or have planned for the rest of the year.

One of the biggest topics of discussion was the future of XLH Days. The last two (MidWest XLH Day and West Coast XLH Day) were great experiences, and we are looking forward to meeting more of our members at future events. The board formalized its intent to hold one XLH Day each year, generally in the summertime. While there are many, many details still to be worked out (and both volunteers and financing to secure), based on the enthusiasm shown by members in Texas recently, we have begun looking into holding the next XLH Day in the vicinity of Houston in late July or early August of 2016.

We also created an ambitious calendar for the board. This fall, we will represent our members at the American Society for Bone and Mineral Research (ASBMR) conference in Seattle and the National Organization for Rare Disorders (NORD) event in DC. We’ll also be attending workshops on how best to interact with the medical research community in the context of the Patient Centered Outcome Research Institute (PCORI.org). For the future (2016 and beyond), we’re looking into the costs and benefits of eventually expanding our representation to conferences of pediatricians, dentists, and orthopedic surgeons.

A great deal of time was spent on some major projects that are either in early, confidential stages or are a bit further along, but not quite ready to be unveiled. You’ll hear more about them over the next six months, and I’m certain you will be as impressed as I am by the dedication of your Board members in pursuing these time-consuming but incredibly valuable initiatives. Based on our hard but often invisible work over the last two or three years, the XLH Network, Inc. is positioned for significant growth in the coming year.

Last, but not least, we spent a substantial amount of time reviewing our financial condition and figuring out how we are going to pay for our existing programs as well as the ambitious new initiatives. We’re confident, however, that our members will step up to ensure that each XLH Day will be even better than the one before, that we can continue to advocate on your behalf, and that XLHers will always be able to turn to the Network to support you through the challenges of living with XLH or caring for someone with the condition. In that vein, it would be remiss of me not to mention that information on donating to the Network can be found here: http://xlhnetwork.org/index.php/donate/

I look forward to moving ahead with the plans made at this meeting and sharing the details of the new initiatives as they are finalized.

Becky Mock
President, XLH Network, Inc.