Wednesday, November 5, 2014

Message from the President

The XLH Network is at a watershed moment, where for the first time ever, there's hope for an effective treatment for both children and adults with XLH within the next five years.

The Network's mission involves education, awareness, and support for the XLH community.  Until recently, with no hope for more effective therapies, we've been primarily focused on providing support for our members through the listserv and a website that provides the most current information on XLH, diagnosis, treatment, and ongoing research. 

While our mission remains the same, we have much more work to do today given the explosion of research into bone metabolism and FGF23. It's more important than ever to reach out to everyone diagnosed with XLH and everyone who might diagnose a patient with XLH.

We can't embrace these new challenges without funding. 

2015 must be a year for securing our stability. This year, we raised a fair amount of money from our member donors, the International Society of Pharmaceutical Engineering, and Ultragenyx Pharmaceutical, Inc./Kyowa Hakko Kirin Co., Ltd. Some of the money raised in 2014 was invested in a strategic planning weekend to set goals for our future work, and grant money specifically supported exhibiting XLH information at medical conferences. The remainder of the money was earmarked for two XLH Days (one in Indiana in a few days and another on the west coast in 2015).  

This one year's infusion of money won't last forever, though, and if we want to continue offering our services to an ever-growing membership, we need your help. We work as a virtual organization dependent on hours of volunteer time given by our board. This must change. We need your financial support so we can keep pace with the growing demands of our membership by moving forward with professional staff. A little or a lot, whatever you can contribute would be greatly appreciated. 

Thank you to each one that donated last year. If you have not donated before, please donate this year. Every donation counts. Help us serve adults and children with XLH everywhere. We can't do it without you!


Becky Mock, President

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