Wednesday, March 16, 2016

Message from President Bill Coogan

It is an exciting time to serve as interim president of the XLH Network. Thanks to the leadership of my predecessor and the many contributions of the board of directors, the scientific advisory board, and our other generous volunteers and donors, we have numerous projects in the works.

Last year we hired administrative assistant, Stacy Duck, and we're now beginning the process of hiring an Executive Director during the second half of this year. Stacy has already completed a number of administrative projects that we'd never had time to do before, and we expect that hiring an Executive Director will enable us to expand by leaps and bounds the amount of work the volunteer officers and board can accomplish on behalf of our members.

The board and I will also be representing XLH patients and their families at numerous venues this year. We will be at the Endocrine Society conference in Boston on April 1-3, the American Society for Bone and Mineral Research conference in Atlanta on September 16-19, along with an assortment of other patient-advocacy events in the U.S., the U.K. and Europe. We're hoping to arrange a time to meet local XLHers when we're at those events, so if you're in the area and would like to say hello, please email me at

Last, but not least, we are hard at work planning XLH Day, to be held at the Shriners Hospital for Children in Houston, Texas, on August 12-13, 2016. We'll have livestreaming for those who can't attend in person, and afterwards there will be videos of the main presentations available at our new Youtube channel,

Please keep in mind that even though we have been fortunate in obtaining grants for our two new employees due to the generosity of Ultragenyx Pharmaceutical, those monies do not cover the rest of our budget, like the cost of our attendance at medical conferences or the expense of this year's XLH Day. If you'd like to make a donation, the information you'll need is here:

I look forward to updating you on our activities as the year progresses, and I thank you for your support.

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