Friday, September 6, 2019

Important Announcement about Executive Director


We are so excited about the ways the Network continues to move forward and serve our members. This year alone, we have piloted our collaborative study BeyondXLH, introduced Community Connections events in an effort to provide members with additional opportunities to meet and learn together, completed our PFDD report that is almost ready to be posted on the FDA’s website, worked behind the scenes with pharmaceutical companies and insurance payers to address how to best assist our members as they consider their treatment options, and worked to support international organizations attempting to make change in their countries.
Rachael Jones has been an inspirational leader during this pivotal year. So, it is with mixed emotions that we are sharing Rachael’s letter resigning her position as executive director. We are beyond excited that Rachael had the unexpected opportunity to return to her first professional love: editing and writing children’s materials. We hope you will join us in wishing Rachael well! We are so thankful that she will always be a part of our XLH family community.
Dear XLH Members,
With a mix of emotions, I announce that I will be stepping down as Executive Director of The XLH Network. I was offered a senior editor position in textbooks and after careful consideration have decided this opportunity was too great for me to decline. Having been in education for fifteen years, this position will allow me to continue to pursue my passions for education, editing, and writing. While I am excited about this opportunity, I am incredibly sad to leave my position as the Executive Director of the Network. I initially took on this role as an interim position, but chose to stay a bit longer. I have enjoyed meeting many of you and getting to hear you share your stories and your experiences with XLH. I know that the Network is in great hands with the Board’s leadership and the support of many of you who have enthusiastically volunteered to support the mission of the XLH Network. I look forward to hearing about all the wonderful things that the XLH Network will continue to do to serve and support XLH families. I hope to see many of you at an XLH event in the future!
With Kind Regards,
Rachael Jones

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