We are excited to announce that Rachael Jones, a fellow XLH Network member, has agreed to assume the position of Interim Executive Director of the XLH Network effective with the resignation of Carol Lafleur at the end of June, 2018. Rachael brings a wealth of nonprofit experience to this interim position, and as an XLH patient herself, she brings firsthand knowledge of what it means to live with XLH.
Rachael is passionate about the work that The XLH Network, Inc. does for XLH patients and caregivers. After attending XLH Day in 2013, she became involved in subsequent XLH Days to help with children’s programs. The daughter of a spontaneous case, Rachael was diagnosed at birth with XLH, and her brother, two nieces, and her own two children also have the condition. In all, there are seven people in her family who have XLH. Rachael desires to find more ways to connect XLH patients and families, and as part of her passion for children and writing, she plans to help develop materials for children with XLH.
Please join us in welcoming Rachael!
The XLH Network, Inc., Board of Directors