Kathleen R. Bogart, PhD
Associate Professor, School of Psychological Science
Oregon State University
Dr. Bogart is Associate Professor of Psychology and Director of the Disability and Social Interaction Lab at Oregon State University. She is a social/health psychologist specializing in ableism and rare disorders such as facial paralysis. She has received grants from the National Institutes of Health, Good Samaritan Hospital (Erkkila Endowment), and the Moebius Syndrome Foundation. She also serves as Consulting Editor for the American Psychological Association journal Rehabilitation Psychology. In 2016, Dr. Bogart was named “Professor of the Term” by the Panhellenic Executive Council of OSU.
Her research focuses on the forgotten “ism,” ableism, or prejudice towards disability. She studies disability from a social psychological perspective, examining others’ attitudes toward disability and the way people with disabilities adapt to their conditions, develop identities, and manage stigma.
Much of her work focuses on the psychosocial implications of living with rare disorders or disabilities, such as Bell’s palsy and Moebius syndrome. In the U.S., rare disorders are defined as affecting fewer than 200,000 people per year. Although there are about 7,000 different rare disorders, the 30 million Americans with rare disorders share similar challenges, including insufficient access to information, support, and treatment. Rare disorders can be stigmatizing because people with them are frequently misunderstood, isolated, and blamed. Her lab is working to build social support and resist stigma in the rare disorder community.
For more information, see her Disability and Social Interaction Lab website.
Gregory Borschel, MD
Chief of Plastic Surgery, Riley Hospital for Children
Dr. Borschel is the Chief of Plastic Surgery at Riley Hospital for Children. His practice focuses on facial paralysis, pediatric nerve injuries, corneal neurotization, congenital hand surgery, and microvascular reconstruction. His research laboratory develops treatments for nerve injuries and improving patient outcomes. He works with neuroscientists, engineers, and doctors around the world to improve treatments for patients with these conditions.
Dr. Borschel graduated from the Johns Hopkins University School of Medicine in 1997 and completed a residency in Plastic and Reconstructive Surgery at the University of Michigan in 2005. He completed a two-year postdoctoral research fellowship in neuromuscular tissue engineering at the University of Michigan, and a fellowship in Pediatric Plastic and Reconstructive Surgery at the Hospital for Sick Children in Toronto, Canada. His clinical work focuses on pediatric facial paralysis, nerve injuries, hand surgery and microvascular reconstruction, and he has pioneered corneal neurotization, a treatment for neurotrophic keratopathy, a rare cause of blindness caused by lack of nerve supply to the cornea. His research laboratory focuses on ways to enhance nerve regeneration, including drug and growth factor delivery, electrical stimulation, and the cellular and molecular mechanisms underpinning neurotrophic keratopathy and corneal neurotization.
Hollis Chaney, MD
Vice Chair of the Division of Pulmonary Medicine
Children’s National Hospital
Hollis (Holly) Chaney, M.D., earned her bachelor’s degree from University of California at Riverside. She received her medical degree from Medical College of Pennsylvania. Dr. Chaney completed both her internship in pediatrics and her residency at Kaiser Foundation Hospital in California. After her residency, she completed a pediatric pulmonary medicine fellowship at Children’s Hospital of Pittsburgh.Dr. Chaney is an Assistant Professor in Pediatrics at The George Washington University School of Medicine and Health Sciences. Dr. Chaney is the Vice Chair of the Division of Pulmonary Medicine at Children’s National Hospital. She is board certified in pediatric pulmonology.
Dr. Chaney has been practicing in Children’s Division of Pulmonary Medicine for over 15 years. She is particularly interested in cystic fibrosis and rare genetic disorders including osteogenesis imperfecta, moebius syndrome and other skeletal dysplasias.
Jacqueline Diels, OT
Jackie received her degree in occupational therapy at the University of Wisconsin (UW) and began her work in facial NMR at University of Wisconsin Hospital and Clinics, Neuromuscular Retraining Clinic in 1986. There she was mentored by Richard Balliet, Ph.D. and Paul Bach-y-Rita, MD, pioneers in the field of brain plasticity and rehabilitation, and among the first to develop a comprehensive clinical program for treating facial nerve paralysis. After almost 32 dynamic years as the facial retraining specialist at UW, Jackie transitioned into full-time private practice in 2017.
In addition to a robust private practice, Ms. Diels consults extensively with physicians and therapists worldwide with particular emphasis on developing strategies for treating synkinesis and specific conditions after facial reanimation surgery. She works very closely with the Facial Paralysis Institute in Los Angeles as well as several physician groups in the Midwest and east coast.
Jackie lectures frequently to patient support groups, physicians and therapists and trains therapists in the U.S. and abroad. She is actively involved in ongoing research and has authored numerous book chapters and articles. Ms. Diels served on the medical advisory board of the Acoustic Neuroma Association (www.anausa.org) from 2002-2017 and currently serves on the medical advisory boards of the Facial Paralysis Foundation (www.facialparalysisfoundation.org), the Bell’s Palsy Information Site (www.bellspalsy.ws) and the scientific advisory board of the Moebius Syndrome Foundation (https://moebiussyndrome.org). She is a founding member and past secretary of the Sir Charles Bell Society, an international consortium of medical professions dedicated to the treatment of facial paralysis.
Jackie’s mission is to empower patients and medical professionals to improve function and quality of life for people affected by facial paralysis, through education, insight, and training.
Elizabeth Engle, MD
Principal Investigator, Engle Laboratory
Professor, Harvard Medical School
Elizabeth Engle received her MD from The Johns Hopkins School of Medicine with an internship and residency in pediatrics. She served as the neuropathology fellow at Massachusetts General Hospital, followed by a neurology residency in child neurology at Children’s Hospital, Boston. Trained in genetics research, Dr. Engle is now professor of neurology and ophthalmology at Harvard Medical School and an investigator of the Howard Hughes Medical Institute. Her lab has made significant finds in congenital cranial nerve disorders. She has received the E. Mead Johnson Award for Research in Pediatrics, The Sidney Carter Award in Child Neurology, and a Research Award for Vision from the Alcon Institute.
David Hunter, MD, PhD
Opthalmologist-in-Chief, Children’s Hospital Boston
David G. Hunter, MD, PhD is Ophthalmologist-in-Chief and the Richard M. Robb Chair of Ophthalmology at Children’s Hospital Boston, President of the Children’s Hospital Ophthalmology Foundation, and Professor and Vice Chair of Ophthalmology at Harvard Medical School. Dr. Hunter obtained a Bachelor of Science in electrical engineering from Rice University and a PhD (in Cell Biology) and MD from Baylor College of Medicine in Houston. After he completed an ophthalmology residency at Harvard’s Mass Eye and Ear Infirmary, he was a fellow at the Wilmer Ophthalmological Institute, Johns Hopkins University, where he remained on faculty until he was selected to become Ophthalmologist-in-Chief at Children’s in the early 2000’s. During his time at Children’s, the Department of Ophthalmology at Children’s Hospital Boston has grown to become the largest pediatric ophthalmology department in the nation and perhaps the world, with 30 full-time faculty, including 15 full-time and 4 affiliated MD ophthalmologists and 6 pediatric optometrists, with pediatric subspecialists in nearly every aspect of ophthalmology, as well as 7 full-time research faculty. The department also has created 7 endowed chairs as well as an endowed international observership to support clinical and basic research, teaching, and the worldwide dissemination of advances in pediatric ophthalmology and strabismus. Dr. Hunter is co-author of the textbook Learning Strabismus Surgery and of the best-selling review manual Last Minute Optics (now in its second edition.) His lectures on optics and refraction for ophthalmologists-in-training around the world are now available free of charge in podcast format.
Philip McClure, MD
International Center for Limb Lengthening
Philip K. McClure, M.D., is a board-certified orthopedic surgeon specializing in limb lengthening and reconstruction at the International Center for Limb Lengthening. His practice focuses on children and adults who require limb reconstruction and/or lengthening due to trauma, infection, congenital conditions and genetic syndromes.
Dr. McClure attended medical school at the University of Pittsburgh. He did his orthopedic surgery residency at Brown University, where he continued to complete a fellowship in orthopedic trauma. After his time at Brown, he went to Texas Scottish Rite Hospital for Children in Dallas, where he completed additional fellowship training in pediatric orthopedics and scoliosis surgery. He further subspecialized in limb lengthening and reconstructive surgery for pediatric and adult patients while a fellow at the Rubin Institute for Advanced Orthopedics’ International Center for Limb Lengthening (ICLL). Before returning to Baltimore, Dr. McClure brought the advanced techniques that he learned at the ICLL to the western United States while practicing at the University of Utah/Shriners Hospitals for Children—Salt Lake City. He is also a clinical instructor of orthopedics at the University of Utah.
Dr. McClure is a member of the Orthopedic Trauma Association, the Pediatric Orthopaedic Society of North America, the Limb Lengthening and Reconstruction Society and the American Academy of Orthopaedic Surgeons. He has volunteered for medical missions to Haiti and the Dominican Republic.
When Dr. McClure is not working, he can be found fly fishing, playing ice hockey, doing pottery or enjoying time with his wife and three children.
Gregory Osborne, DDS
Dr. Greg Osborne is a dentist and father of a Moebius Syndrome daughter. He and his wife have been involved with her care since 1993.
He is a Diplomate of the American Board of Dental Sleep Medicine and a Fellow of the Academy of Dentistry International. Dr. Osborne was the founder of a small group dental practice in 1981. More recently he started a dental sleep medicine practice that helps manage patients with sleep breathing disorders such as obstructive sleep apnea.
Dr. Osborne has served as Clinical Faculty Assistant Professor at his alma mater, the University of Texas Health Science Center at San Antonio Dental School, since 2005. He is a life member of the American Dental Association and the Academy of General Dentistry. He has spoken to groups at the Moebius Syndrome Foundation Conferences over the years.
Richard J. Redett, MD
Director, Johns Hopkins Cleft and Craniofacial Clinic
Johns Hopkins Hospital, Baltimore, MD
Dr. Richard Redett is director of the Johns Hopkins Cleft and Craniofacial Clinic and a pediatric plastic and reconstructive surgeon. His research interests are in peripheral nerve regeneration and surgery. His clinical interests include pediatric plastic surgery, facial paralysis, obstetric brachial plexus palsy, cleft lip and palate, and pediatric burn surgery.
Rhonda Robert, PhD
Professor of Clinical Psychology
University of Texas, MD Anderson Cancer Center, Houston, TX
Dr. Rhonda Robert is a Professor of Clinical Psychology. She works at the Children’s Cancer Hospital, University of Texas MD Anderson Cancer Center in Houston, Texas, and previously worked at the Shriners Burns Hospital, in Galveston, Texas. She counsels persons who are emotionally adjusting to changes in physical appearance and functions, following illness or injury.
Renee Roy Hill, MS, CCP-SLP
Crossroads Therapy Clinic
Renee Roy Hill, MS, CCP-SLP Renee Roy Hill has provided therapeutic assessments and program planning for adults and children with oral placement, feeding and motor speech deficits for over 17 years. She is the owner of Crossroads Therapy Clinic in New Braunfels, TX and a member of the TalkTools® speakers bureau. Renee has been an invited speaker for ASHA state conventions and has received specialized training in speech/oral-motor/feeding therapy, Apraxia, sensory processing disorders, Hanen Courses, NDT training, TAMO therapy and PROMPT. She is the creator of the TalkTools® Schedule Board Kit, co-author of Ice Sticks, and author of the TalkTools® Apraxia Program.
Ethylin Wang Jabs, MD
Mount Sinai Medical Center, New York, NY
Involved in medical genetics for at least 30 years, Ethylin Wang Jabs is Professor of Pediatrics and Professor of Developmental and Regenerative Biology at Mount Sinai School of Medicine. She is Vice Chair of the Department of Genetics and Genomic Sciences and is an Adjunct Professor of Pediatrics, Medicine and Surgery at Johns Hopkins University. Her expertise is in developmental genetics of congenital anomalies and she has conducted research on the molecular basis of human malformation disorders including Moebius syndrome. She has an active practice and sees patients with dysmorphology. Dr. Jabs has been on the Scientific Advisory Board for the Moebius Syndrome Foundation since 2002.
Emeritus Scientific Advisory Board
Ronald M. Zuker, MD
The Hospital for Sick Kids, Toronto ON
Ronald Zuker was born in Niagara Falls, Canada and received his MD degree from the University of Toronto in 1969. After a rotating internship in Vancouver, BC and a brief period of family practice in Scarborough, he pursued his interest in Anthropology and Jungle Medicine, spending one year working with the Shipibo Indians in the Amazon basin – eastern Peru. He then entered the McGill University Training program in Surgery and completed the FRCSC in Plastic Surgery in 1976 through the Gallie Programme at the University of Toronto. He received a McLaughlin Travelling Fellowship to study microvascular surgery and pediatric plastic surgery in Japan, New Zealand, Australia and Europe. In 1978 he joined the staff of The Hospital for Sick Children as a consultant in Plastic Surgery, was appointed to the Department of Surgery of the University of Toronto as a lecturer in surgery in 1978, an Assistant Professor in 1982, Associate Professor in 1987 and Full Professor in 1994. He served as Chief of the Division of Plastic Surgery at SickKids from 1986-2002.
As a pediatric plastic and reconstructive surgeon, his primary interest is in facial reanimation and is the recognized worldwide authority. Dr. Zuker is currently co-director of the Facial Paralysis Programme at Sickkids. He also has a major interest in the management of cleft lip and palate and, in addition to his volunteer surgical commitment, serves on the Plastic Surgery Council of “Operation Smile.” He was Medical Director of SickKids Cleft Lip and Palate Program for over a decade.
Dr. Zuker is the past Chairman of the American Academy of Pediatrics, Section of Plastic Surgery, past president of the American Association of Pediatric Plastic Surgeons, and past president of the American Society for Reconstructive Microsurgery. He is very active in teaching and in the training of future reconstructive surgeons, and in the structuring of the Vascularized Composite Allotransplantation Team in Toronto.
His clinical focus is on Moebius syndrome, facial paralysis reconstruction, tissue expansion in children, and cleft lip and palate. Dr. Zuker became an Emeritus Scientific Advisory Board Member in 2022.