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.

Sarah has a daughter with a spontaneous case of XLH. She feels fortunate that she was able to get her daughter diagnosed and treated early in her life, and her goal as a board member is to reach out to other families and advance awareness and education of XLH . Her professional background is in corporate finance, and she volunteers in her community as a softball coach, at her children’s school, and at various military veteran’s events. She resides in Connecticut with her husband and daughters.

Sunindiya’s skills from working in the nonprofit world for many years – including fundraising, policy, and impact work – help to ensure the growth and ongoing success of the Network. She is particularly interested in ensuring that teens and young adults – especially those with spontaneous XLH – have strong support in their journey into adulthood. Besides working and volunteering her time, she loves going to the beach, relaxing on her porch with coffee and a good book, and spending time with her mom. She is also hoping to adopt a baby sometime in the near future.

Oliver is based in London and works for Havas, a creative digital marketing and media agency. He specializes in operations and technical delivery. Born in Oxford, Oliver inherited XLH and comes from a family of fourteen XLH’ers spanning four generations.  Oliver founded XLH UK, a charity to support those with XLH and related disorders in the United Kingdom and is the current Chair of the International XLH Alliance.

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.

Kelly Rushing is serving her first term as a board member but has been involved with the XLH Network for several years as a volunteer.  She has a multi-generational family of others who have XLH, just like her. She loves creativity,  public speaking, and people. Kelly lives in East Alabama with her husband and four dogs. She will be pursuing a degree in human resources with an emphasis on communications soon.

Charles is excited to serve his first term on the Board and to contribute his diverse skills and talents to further the mission of the XLH Network. He discovered the Network when his child was diagnosed with a spontaneous case of XLH and has since become a familiar face behind-the-scenes at many XLH Network events, including the very first XLH Day held in 2011.

With a background in systems and organizational development, communications, and technology and a passion for helping others, he is committed to helping the Network’s continued growth and success in achieving its goals.

Charles resides in Connecticut with his wife and teen. When not working with the Network, he is a clinical case manager with a non-profit agency serving the adult mental health community.

Chris is Chair of the Technology Committee. He joined the Network in 2000. Being the only one out of nine children to have XLH, Chris is undoubtedly a spontaneous case and has a passion for XLH advocacy, education and support. He is married and has one non-affected son. Chris is a Component Design Engineer at Intel Corporation, and has worked in the semiconductor industry for over 30 years. He also has a love for music, plays guitar and mandolin, and in his spare time he and his wife front a band, performing regularly at local clubs and festivals.