About Us

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.

Aly Way is a remarkable individual who has shown incredible strength and resilience in her journey living with XLH  and advocating for the XLH community throughout her lifetime. Born and raised in San Antonio, Texas, Aly works to raise  awareness and promoting understanding about XLH.  As a hereditary case of XLH, Aly is a 4th generation XLH-er and has faced unique challenges and obstacles. However, she has never let her condition define her or limit her aspirations. In her work life, Aly runs a design center where she showcases her creativity and passion for home design and organization. Her dedication and talent have made her a respected professional in her field.  Despite her busy schedule, Aly always makes time for what truly matters to her – her family and her beloved dog, Pearl. Aly’s positive and joyful spirit is contagious, and her loved ones treasure the happiness she brings into their lives.

Marian is from Zionsville, Indiana and is currently Clinical Research Leader at Indiana University Division of Endocrinology where she has been since 2002.  She began working with XLH patients around 2010.   During this time she has learned so much from her patients and colleagues across the world. She believes that knowledge is power and that education of patients and family regarding their condition is a top priority. Her spare time is taken up with two teenage boys.

Christi is excited to join the board after first being introduced to the XLH Network in early 2021. She quickly became personally invested in the community and plans to use her experience in patient advocacy to continue to ensure the patient and caregiver voices are heard. She became passionate about rare diseases after the adoption of her son, Jaxon, in 2016, not knowing much about his genetic history. Christi and Jaxon reside in a small town north of Chicago along with their beloved pets. Besides her work in patient advocacy, Christi enjoys volunteering with a local animal rescue organization. There, she serves as a photographer, taking pictures of the animals in hopes of helping them find their forever family.  Christi is looking forward to meeting many more members of the XLH community and working to create greater awareness of the condition.

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.