Tuesday, December 29, 2015

Message from Network President Becky Mock

It has been an honor and a privilege to serve as the President of the XLH Network for the past three years, but it is time for me to pass the gavel to someone else. I will be stepping down as president at the end of this year, although I will continue to work as an at-large Board member.

Current Vice-President, Bill Coogan, will be stepping up to the presidency. Many of you have met Bill and know, as I do, that he brings a great deal of dedication, skill, and personality to the organization.

Over the past few years, we've accomplished a great deal—the Board of Directors, the membership, and I, all working together. It has been my mission to transition the Network from an all-volunteer group to one with paid staff, and I am pleased to say that we have taken the first steps toward that goal.

During my tenure, two grants were funded by Ultragenyx Pharmaceutical, one to underwrite a substantial portion of the cost of hiring an administrative assistant, and the other to do the same to hire an executive director. The administrative assistant is in place. The process for hiring the executive director has begun, and I am confident that with grant funds available and the recruitment process underway, we will move forward and hire our first executive director in 2016.

I am proud that we have seen XLH Days become life-changing experiences, offering both educational opportunities with expert presentations about XLH, and fun times helping people with XLH meet "someone like me," perhaps for the first time ever. We know how important it is to bring XLH Day to all parts of the country. We’ve held events in New York, Connecticut, Indiana, and California. Work is well underway for the Texas XLH Day in 2016. We’ll get back with more information and a definite date as soon as we can get the logistics sorted out.

We cannot take a rest. We must forge on. The XLH Network is the ONLY organization that advocates for you and others with XLH. There is much more to do to maintain our new initiatives and advance our future projects. We cannot do all that is needed with the funds we have now. Our budget is tight, focused and designated for the work we're doing today. To maintain, we need your help. To grow, we need more donations and support. We are the best investment you can make if you wish to make a difference in the lives of everyone with XLH.

Finally, I would like to thank everyone that has volunteered or made a donation during my presidency. I'm counting on you to offer that same support to future presidents. Please help the Network continue to advocate for everyone with XLH and their families.

We can't do it without you!


Becky Mock, President

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