Thursday, April 4, 2019

Meet a Member Wednesday - Executive Director

This week we have a special edition of Meet A Member Wednesday! This week we’re meeting our XLH Network Executive Director, Rachael Jones! Rachael lives in Colorado Springs with her husband and 2 children, one girl (5 years old) and one boy (7 years old).

Rachael loves camping with her family, baking, dancing, and writing. Particularly, she loves writing children’s stories, non-fiction stories, and blogging. She also loves traveling—from visiting castles in Scotland to getting up close and personal with kangaroos in Australia! Rachael is a former teacher and administrator. She has taught math, literature, and theater to students in Kindergarten, all the way up to high school age. Now, she is our full time Executive Director and we couldn’t be happier!

XLH started with Rachael’s mother (a spontaneous case). Her older brother, two nieces, and her two children all have XLH. Blood tests were used to make the diagnosis.

XLH has taken a toll on Rachael’s ability to keep dancing. She has days where it is extremely painful to move around (especially in winter) and keep up with her active kiddos. Rest, heat patches, and sitting under an electric blanket are different methods Rachael uses to help with the aching.

In 2013, right after Rachael’s daughter was born, she began searching for answers on treatment for XLH. This is when she found out about the Network and attended her first XLH Day. Rachael says, “I cannot express how grateful I am to have found the Network. I came seeking knowledge, and found more information than I could have ever imagined. But just as importantly, I found a community of fellow XLHers who are supportive, encouraging, and strong.”

If you are interested in being featured in a Meet a Member post, please email Kim Murray at

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