Susan Faitos, M.A., L.M.F.T.
The Board of Directors of The XLH Network, Inc., is delighted to announce that Susan Faitos has been named Executive Director of the Network. Susan has spent over thirty years in the social work and mental health fields working primarily with nonprofit, community-based organizations, and she started her own 501c3 nonprofit organization when she was just twenty-five years old. Currently she works part-time as a Clinical Director of Behavioral Health Services for a local agency in Santa Cruz, California.
Susan has been a familiar face at Network events over the last few years and she was responsible for organizing last year's Symposium/PFDD in Baltimore. We are grateful that she has chosen to contribute her wealth of experience in the nonprofit world to the Network and our community. Susan was diagnosed with XLH at eighteen months of age, so she also brings a lifetime of understanding to the position.
We are excited to continue to grow and to commit to our community of patients under Susan’s leadership. You can reach her at ExecutiveDirector@xlhnetwork.org.
JoBeth Souza, President: 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 12 years and this is 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 and her children's schools.
Shannon Sharp, Vice President: Shannon is serving her first term as a board member, although she 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 Olear, Secretary: Elizabeth is currently serving a three-year term on the Board of The XLH Network, Inc. She 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.
Geoff Edelson, Treasurer: Geoff is serving a three-year term on the Board of the XLH Network, Inc. after joining the Network in 2003. He was diagnosed with a spontaneous case of XLH as a child in the early 1960s. Geoff resides in Massachusetts with his wife, Lisa. Neither of their adult children have XLH. Geoff is a Chief Scientist at BAE Systems, FAST Labs with a focus on undersea systems and technology.
Christopher Younger: Chris is currently serving a three-year term on the Board of The XLH Network, Inc., and he 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 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.
Oliver Gardiner: 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 X-Linked Hypophosphatemia and comes from a family of fourteen XLH’ers spanning four generations. He is currently serving his second three-year term on the Board of Directors at the XLH Network, Inc. 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.
Sara Show: Sara is currently serving a two-year term on the Board of The XLH Network, Inc. She and her family reside in South Dakota. She joined the Network in 2016, after her daughter was diagnosed with XLH, later determined to be a spontaneous case. Sara is an Associate Attorney with a private litigation firm and has had the privilege to work for a Senator, the US Attorney in South Dakota, a State’s Attorney in South Dakota, and several Judges in South Dakota State Court. She enjoys spending time with her husband and their daughter, who has XLH, and son, who does not have XLH. She is also currently a member of the fundraising committee for the Network.
Sunindiya Bhalla: Sunindiya is excited to join the board to more formally bring the skills she has from working in the nonprofit world for many years - including fundraising, policy, and impact work - 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, being on my porch with coffee and a good book, and spending time with my mom. She is also hoping to adopt a baby sometime in the near future.
Sarah Das: Sarah is new to the board this year, but not new to XLH. She 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 Connectidut with her husband and daughters.
Marian Hart: 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.
Jason Grant: Jason lives in Columbia, MO with his wife Lisa and their two children. He is serving a three year term on the board of directors. Although XLH has come with struggles, his family and the connections made in the XLH network have afforded him the opportunity to connect with a community that understands the hardships, and support needs of living with a rare disease, and this encourages him to do the same for others. XLH taught Jason the importance of empathy and compassion, which he is fortunate to use in his work as a nurse. Jason enjoys spending free time with his family, being active, playing board games, and traveling. He looks forward to using his passion for learning and community to strengthen communication and support for families encountering the challenges of XLH.
Carolyn M. Macica, Ph.D. - Scientific Advisory Board Chair
Frank H. Netter School of Medicine, Quinnipiac University
Joint appointment at Yale University School of Medicine
Thomas O. Carpenter, M.D.
Michael Econs, M.D.
Suzanne Jan de Beur, M.D.
Johns Hopkins University
Peter S. N. Rowe, Ph.D.
The Kidney Institute & Division of Nephrology
University of Kansas Medical Center
Raghbir Kaur, DMD
Assistant Residency Director
Maya Helene Doyle, PhD, LCSW-R
School of Health Sciences, Quinnipiac University
Erik Imel, M.D.