About Us
In 1996 a college student in Minnesota connected online with a man in England whose wife and children have XLH, and with a man in British Columbia whose son had a spontaneous case. All of them were looking for help on the internet, and from this connection The XLH Network was founded as an international volunteer group of people affected by or interested in XLH, or X-Linked Hypophosphatemia. Today we’re incorporated as a 501(c)(3) tax-exempt charity – making all donations tax deductible to the fullest extent allowed by law. We are the first organization in the world specifically dedicated to XLH.
The XLH Network is helping thousands of people around the world who are affected by or interested in XLH and related disorders of phosphate wasting. Our website provides information to people around the world with up-to-date information on diagnosis, treatment and the very latest research. XLH Network membership is growing daily, and members have available to them a variety of tools that help connect patients with each other, as well as with clinicians and researchers.
OUR MISSION
The mission of the XLH Network is to promote XLH awareness and education for affected families, medical professionals, and the community at-large; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families so they can understand and cope with the complications of the disease; and to foster the search for a cure.
Leadership
SUSAN FAITOS, M.A., L.M.F.T.
EXECUTIVE DIRECTOR
Susan has spent over thirty years in the social work and mental health fields working primarily with nonprofit, community-based organizations. She has been a familiar face at Network events since 2015; first as a member, then a volunteer. She became a board member in 2018 and then took on the role of Executive Director in 2019. We are grateful that she chooses 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. She resides in sunny California and can often be found either at the beach or among the redwoods.
We 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 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 SHARP
VICE PRESIDENT
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 OLEAR
SECRETARY
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.
REBECCA FIELDS
TREASURER
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.
SHIRLEY (MACY) BROWN
BOARD MEMBER
Macy, like many individuals living with XLH, has experienced multiple related health conditions throughout her life. She has learned to navigate these challenges by relying on her faith and the support of her family. Macy is married and has three grown children and one granddaughter.
As she continues to age with this disease, her goal is to educate herself and others about ways to improve quality of life while living with XLH.
ASHLEY GREBE
BOARD MEMBER
Laura Ashley Grebe Clemens, who goes by Ashley, lives in Lansdale, Pennsylvania,Ashley is a second-generation individual living with XLH, which was passed down from her biological mother. Her daughter, Sophia, also inherited XLH.
Currently, Ashley is involved with Pup Squad, helping children stay connected even when they are apart. She has advocated for XLH on Capitol Hill during Rare Disease Week and her family also serves as an Ambassador Family for Children’s Hospital of Philadelphia. Ashley is deeply passionate about XLH and committed to educating others about the condition.
JAYLA KLASE
BOARD MEMBER
Jayla currently lives in Lebanon, Pennsylvania with her fiancé and their cat. She graduated in December ’23 from Shippensburg University with a dual major degree in Early Childhood Education and Special Education. In her free time she loves to volunteer at community events, travel, and spend time with her family. Her mother has XLH, and it can be tracked back three generations to her great-grandmother. Since the XLH Network has done so much to help Jayla and her family, she felt the desire to be a part of the Network so that she is able to help others and to spread education as well as awareness about XLH!
CHRISTI LINDH
BOARD MEMBER
Christi 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.
MALLIKA RAY
BOARD MEMBER
Mallika brings both lived experience and deep empathy to the board. She is the mother of twin boys who also have XLH, which has further fueled her commitment to ensuring underserved individuals and families receive equitable access to care. She leads a family foundation focused on supporting underserved communities and holds a Bachelor’s degree in Psychology and an MBA in Healthcare Management. Based in Chicago, Illinois, she is passionate about giving back and is honored to serve on the board, where she looks forward to making a meaningful impact. Her work and values are guided by the belief that: “The more you do, the more you can do.” — Steve Chandler
KELLY RUSHING
INTERIM TREASURER
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.
CARRIE STEARNS
BOARD MEMBER
ALY WAY
BOARD MEMBER
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. 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.
CASSANDRA MOY
EXECUTIVE ASSISTANT
A Worldwide Patient Support Organization for People Living and Dealing with X-Linked Hypophosphatemia (XLH)
SCIENTIFIC ADVISORS
ERIK IMEL, M.D.
Erik Imel, M.S., M.D. is a Professor of Medicine and Pediatrics at the Indiana University School of Medicine. His clinical and research focus is on bone and mineral disorders, especially rare bone disorders, including X-linked hypophosphatemia (XLH). His unique background includes dual training and certification in both Adult and Pediatric Endocrinology at the Indiana University School of Medicine enabling him to help patients across both sides of the transition to adulthood. Dr. Imel is also an Affiliate Scientist of the Regenstrief Institute’s Center for Biomedical Informatics, and the Methodology Core Director for the Indiana Center for Musculoskeletal Health-Clinical Research Core, conducting biomedical informatics studies of musculoskeletal outcomes. He has conducted clinical and translational research in both rare and common musculoskeletal diseases, including clinical trials of burosumab in X-linked hypophosphatemia (XLH).
THOMAS O. CARPENTER, M.D.
Thomas Carpenter is Emeritus Professor of Pediatrics and Senior Research Scientist at the Yale School of Medicine. He received his medical degree and underwent pediatrics training at the University of Alabama. While training in endocrinology at Boston Children’s Hospital, he began a career-long involvement in clinical research focused on metabolic bone disorders. He has been at Yale for nearly 40 years, initiating the Pediatric Endocrinology Fellowship Program and directing it for nearly 20 years. Dr. Carpenter founded Yale’s interdisciplinary Pediatric Metabolic Bone Disease clinic, and the Yale Center for X-Linked Hypophosphatemia, a setting for the study and clinical care of children with XLH and related conditions. His engagement with them has been the most rewarding part of his career. He has authored over 200 articles, reviews, and book chapters related to metabolic bone disease in children. He is a member of the Endocrine Society, American Society for Bone and Mineral Research, and the Pediatric Endocrine Society.
MICHAEL ECONS, M.D.
Michael Econs, MD joined the Indiana University School of Medicine in 1997. He is currently the Glenn W. Irwin, Jr. Professor of Endocrinology and Metabolism and Director of the Division of Endocrinology and Metabolism. Dr. Econs earned his MD degree from the University of California, San Francisco and did his Internal Medicine residency at the University of Maryland. He completed his Endocrine Fellowship at Duke University and was on faculty at Duke until coming to IU.
Dr. Econs sees patients on an outpatient basis with a variety of bone and mineral disorders. His lab does clinical, translational and basic studies of metabolic bone disease. Work in the Econs lab led to the discovery of FGF23, which eventually led to the first new therapy in over 30 years for X-linked hypophosphatemic rickets (XLH) and tumor induced osteomalacia (burosumab, Crysvita®). His past work described novel clinical features of autosomal dominant hypophosphatemic rickets (ADHR), which eventually led to an understanding of the relationship between iron deficiency and increases in FGF23. His lab is currently performing translational studies in autosomal dominant osteopetrosis (ADO2) using a mouse model of this disease, which was developed in his lab, and he has co-initiated a natural history study in ADO2 patients. His lab continues to do research in the genetics of osteoporosis and is performing translational studies of a novel gene. He has over 170 publications and has been continually NIH funded for over 30 years.
Dr. Econs has received numerous awards including the ASBMR Fredrick C. Bartter Award in 2012 and was the first recipient of the David Burr Leadership and Service Award from the Indiana Center for Musculoskeletal Health. He served on the NIAMS Council from 2017 to 2020 and as President of the ASBMR in 2018.
SUZANNE JAN DE BEUR, M.D.
Suzanne Jan de Beur, M.D., is the Gerald D Aurbach and Professor of Endocrinology and Chief of the Division of Endocrinology and Metabolism at University of Virginia School of Medicine.
Dr. Jan de Beur graduated from Cornell University and Cornell Weill Medical College. She completed the Osler Medical Residency at the Johns Hopkins Hospital and her fellowship in Endocrinology and Metabolism at the Johns Hopkins University School of Medicine.
As a Physician-Scientist and a practicing Endocrinologist, her clinical and research work focus on understanding rare and metabolic bone diseases at the basic level and translating these observations to the bedside. She has helped characterized the molecular basis of several disorders of mineral metabolism including pseudohypoparathyroidism, progressive osseous heteroplasia, and tumor induced osteomalacia. Her work has led to important new treatments for X-linked hypophosphatemia, tumor induced osteomalacia and osteogenesis imperfecta.
She is an internationally recognized expert in osteoporosis and rare bone diseases and has contributed to many clinical guidelines for the care of patients with these disorders.
Dr. Jan de Beur is a member of several professional and honorific societies including the Endocrine Society, the American Society of Bone and Mineral Research (ASBMR) and the Association of Osteobiology. She is a Past President of the American Society of Bone and Mineral Research and a Fellow of the ASBMR. Dr. Jan de Beur is the recipient of the Shirley Hohl Award and the Boy Frame Award of the American Society of Bone and Mineral Research.
MAYA HELENE DOYLE, PHD, LCSW-R
Maya Doyle, MSW, PhD, is a professor of Social Work and Medical Sciences at Quinnipiac University, and has worked in pediatrics, nephrology, and rare disease for more than 25 years. She is committed to understanding the lived experience of patients and families living with rare illness and in the transition to adulthood and adult-oriented systems of healthcare. She is on the advisory boards of the Cystinosis Research Network and the XLH Network. Dr. Doyle continues her advocacy increasing genetic and genomic literacy for social workers, and is a founding member of the Social Work and Genetics Collaborative.
RAGHBIR KAUR, DMD
Assistant Residency Director
Pediatric Dentistry
NYU Langone
Susan Starling, MS, CGC
Susan Starling, MS, CGC is a certified senior genetic counselor who works with pediatric patients and their families at Children’s Mercy Hospital in Kansas City. She is a Teaching Assistant Professor of Pediatrics at the University of Missouri – Kansas City School of Medicine. Her primary clinical focus encompasses skeletal and connective disorders, including XLH, hypophosphatasia, osteogenesis imperfecta, and Ehlers-Danlos syndrome. Susan is an active member of the National Society of Genetic Counselors and has given many well-received presentations comprised of novel research. She is passionate about genetic education and rare disease awareness. Susan holds a master’s degree in Genetic Counseling from Virginia Commonwealth University.
Joshua Wellington, MD
Dr. Wellington is a leading expert in Intrathecal Care and currently works as Center for Pain Management’s Targeted Drug Delivery Director. He has 20+ years of experience implanting Intrathecal Pumps and enjoys providing interventional pain care to improve the quality of his patient’s lives.
Dr. Wellington specializes in Targeted Drug Delivery, having implanted approximately 3,000 pumps. He brings years of experience annd consistently works to expand patient access to quality interventional care.
Prior to joining the Center for Pain Management, Dr. Wellington had spent 25+ years treating patients using a multidisciplinary approach, combining the latest advancements in pain management with a patient-centered focus in an academic setting.
He holds dual board certification in Physical Medicine & Rehabilitation and Pain Medicine and currently practices in Fishers, IN
Contact Us
The XLH Network, Inc.
911 Central Ave., #161
Albany, NY 12206
XLH Network
A Worldwide Patient Support Organization for People Living and Dealing with X-Linked Hypophosphatemia (XLH)
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