JoBeth lives in North Carolina with her two children, one of whom has a spontaneous case of XLH. She has used the Network as a resource for the past many years and this was her motivation for becoming a board member. Currently working as a Wealth Management Advisor, JoBeth’s other activities include dance classes and piano lessons. She also volunteers in her community, at her church, as well as her children’s schools.

Shannon has been a long-time advocate for families living with XLH. Her goal is to help others connect and support each other. She recently retired as an office manager for a physical therapy company after 22 years of service. In her retired life, she enjoys traveling, camping with her family, visiting the beach and meeting new XLH Network members and offering support and resources.

Elizabeth originally joined the Network shortly after accepting a position in Pediatric Endocrinology at the Yale Center for XLH where she is currently the Senior Clinical Research Associate. She founded XLH Day in 2011 to give patients and their families the opportunity to meet each other and to improve education and awareness for the disorder. She is originally from Connecticut, attended college and graduate school in and around Boston, and currently resides in Connecticut. Her hobbies include yoga, travel, cooking and reading.

Becky lives in Bargersville, Indiana. Her husband and at least 6 generations of his family have XLH. The XLH Network has guided her and her husband to many resources for those with XLH but also to a community of friends. This motivated her to want to volunteer and help others learn about the community of support available. Becky works for a medical insurance company as a Regulatory Affairs Manager and has been in the insurance industry for 24 years. She volunteers in the nursery at her church and her hobbies include scrapbooking, board games and sewing purses and bags.

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