Yale Center for X-Linked Hypophosphatemia

 

ADVISORY BOARD MEMBERS

Joan Reed

 

 

 

 

 

Joan Reed is a founding member of the XLH-Network and for the past 7 years has been a major contributor to the network’s “list-serve.” Joan became the coordinator of the list-serve in November of 2000, and continues to work with the Network’s founders Larry Winger and Colin Steeksma. along with another coordinator Elaine Jacobson. Joan has assisted with day-to-day operations for the network for several years. She was a major force in moving the XLH-Network to incorporated status as a not-for-profit organization. XLH Network, Inc. was incorporated in February 2005 and obtained 501(c)3 status in November 2005. This organizational development has allowed the XLH-Network to initiate fund-raising efforts and to increase awareness about XLH.

Prior to her raising a family, and to her involvement with the XLH Network, Joan was a legal secretary and a secretary in long-range planning development efforts at Union Carbide.  Her family has a 3-generation history of XLH. As the disorder is often overlooked, misdiagnosed or mistreated, Joan saw the potential for the organization to improve this situation, and was prompted to become involved with the XLH Network. Currently, Joan and her husband Ron own and operate a restaurant. While her time is quite limited by this work, she remains actively involved with the XLH Network.

Larry Winger

 

 

 

 

 

Larry Winger serves a unique role on the YC-XLH Advisory Board.  He earned a doctorate from the University of Pennsylvania and He has had a long and distinguished career as immunologist and biochemist working both in industry and in academia in Switzerland, and in the UK, most recently at the University of Newcastle. However,  besides his considerable scientific expertise, Larry brings to the board the perspective of a parent with a child who has XLH.  The board is fortunate to have someone who sees this disease from two points of view.  Larry was instrumental in the founding of the XLH-Network and he remains very active with that group.  He is also active in community affairs in the Northumberland village of Allendale, which was named  “English Village of the Year” in 2007; news of this honor breaking while Larry was attending the 2nd YC-XLH Advisory Board Meeting in New Haven!

Francis H. Glorieux

 

 

 

 

 

 

Dr. Francis H. Glorieux was born in Brussels, Belgium.  He received his M.D. degree from the University of Louvain in 1963 and his Ph.D. degree from McGill University in 1972.  It is there that he developed his interest in heritable pediatric bone diseases.  His doctoral thesis focused on patients with hypophosphatemic rickets. With the characterization of a specific defect of renal phosphate transport, came the demonstration that the combination of calcitriol and phosphate allowed for satisfactory growth and control of the bone disease in hypophosphatemic rickets.  This therapeutic approach is now used worldwide in such patients.

Dr. Glorieux most recent interest is to evaluate the possible beneficial effects of bisphosphonate in severe forms of Osteogenesis Imperfecta (OI).  A pilot study, published in the New England Journal of Medicine, underlined the remarkable response of children with OI to bisphosphonate therapy.  This avenue is pursued in different age groups, using different bisphosphonates molecules. Programs based on the Montreal protocol have now been developed all over the world.

Dr Glorieux’s group has also recently contributed the delineation of three new forms of OI not linked to collagen mutations that may help to clarify the basic abnormalities underlying this complex condition.

Dr. Glorieux received a Queen Elizabeth II Scientist Award from the Medical Research Council of Canada and was for three years a Scientist of the Fonds de la Recherche en Santé du Québec.  Since 1972, he has been the Director of Research and Head of the Genetics Unit at the Shriners Hospital for Children in Montreal.  He is a Professor of Surgery, Pediatrics and Human Genetics at McGill University, where he has also served a term as Associate Dean for Graduate Studies and Research in the Faculty of Medicine.  He is an Adjunct Professor of Pediatrics at the Université de Montréal. A former member of the American Society for Bone and Mineral Research (ASBMR) Council, he was the 1993 recipient of the Frederic C. Bartter Award of the ASBMR.  He also served as President of the International Bone and Mineral Society (IBMS), and as co-chair of the IBMS-ASBMR Joint Meeting in San Francisco, in December 1998. He is the Chair of the Local Committee to organize the 2007 IBMS Meeting in Montreal. In 2003, he was the recipient of the Elsevier Award of the IBMS, and the Jonas Salk Award of the Ontario March of Dimes. In the same year, he was granted an honorary doctoral degree by the University of Amiens (France). In 2004, Dr Glorieux was made an Officer of the Order of Canada, the country’s highest honor for lifetime achievement.

Ralph Meyer

 

 

 

 

 

 

Ralph Meyer was the first investigator to establish that the phosphate-wasting, which characterizes XLH, is due to a circulating blood factor.  His seminal work two decades ago revolutionized our understanding of this disease, and ushered in the modern era of hormonal regulation of phosphate metabolism.  Dr. Meyer took his undergraduate and doctoral degrees at the University of Maryland.  He spent the majority of his professional career at Marquette University in Milwaukee, Wisconsin where he was Professor of Physiology. He was director of the Biology Division of the Orthopedic Research Laboratories at the Carolinas Medical Center in Charlotte from 1990 until his retirement in 2005. He remains as Director Emeritus of the Biology Division as well as Adjunct Professor of Biology at the University of North Carolina at Charlotte.  We are very fortunate, indeed, to have Ralph as a member of our Advisory Board.

 

Joe Craft

 

 

 

 

 

 

Dr. Joseph Craft is Professor of Medicine (Rheumatology) and Immunobiology, and Chief, Section of Rheumatology.  He has directed the Yale Investigative Medicine Program since 2004.  He is an internationally recognized expert on the pathogenesis of systemic autoimmune diseases, investigating both animal models of disease and patients in the clinic, and directs a research laboratory currently comprised of 4 graduate students (Ph.D. and M.D., Ph.D.), three postdoctoral fellows (M.D. and Ph.D.), one undergraduate and three technicians.  He has been continually funded by the NIH since he joined the faculty at Yale in 1985, and is currently an NIH MERIT Awardee.  He is also the principal investigator of an NIH T32 grant devoted to training of physician- and Ph.D-scientists in the clinical investigation of rheumatic diseases, now in its 32nd year of continual funding, and as P.I., has successfully shepherded that grant through three competitive renewals.  He has served as a mentor to more than 40 of his own trainees (postdoctoral fellows, and graduate and medical students), plus numerous rheumatology fellows as Section Chief, many of whom have taken positions in academia or industry.