CLINICAL
SERVICES Specialists in Pediatrics, Pediatric Neurology and Genetics evaluate
every child with HPE seen at KKI. Due to the highly variable presentation
of HPE, an individualized plan of care is designed for each child in
collaboration with the family and/or child caregivers. The expertise at
the Kennedy Krieger Children’s Hospital is available to children seen
through the Carter Center, and, when appropriate, consultations regarding
mobility, communication, feeding and nutrition will be obtained. To schedule an appointment or inquire about clinical services for
children with holoprosencephaly or a related brain malformation, contact
the Center Directors Elaine Stashinko, RN, PhD at hpe@kennedykrieger.org
or call (443) 923-9146. 443-923-9145 (Fax) EDUCATION/FAMILY SUPPORT We are dedicated to supporting families in caring for children with
holoprosencephaly. The Carter Center at KKI is also one of several Carter
Centers nationally, and as part of this network, we are participating in
several initiatives which are focused on linking together patients,
families and professionals with an interest in HPE. We are trying to
establish an American HPE Support Group. Such a group would be an
organized forum for families with children with HPE to support each other.
There is a National Carter Center HPE Website that has information on
holoprosencephaly, answers to frequently asked questions (FAQs), family
pages, a forum for family-physician exchange, the latest news on HPE, and
related links. To access the National Carter Center HPE Website go to www.stanford.edu/group/hpe. RESEARCH
SERVICES A priority of the Carter Centers is the development of a comprehensive
research program focused on (1) constructing a clearer definition of HPE
diagnosis and progression (2) defining interventions that improve the
symptoms and quality of life for children with HPE and their families. In addition to clinical services, the KKI Carter Center offers affected
children and families the opportunity to participate in the latest
research on holoprosencephaly and related brain malformations. We are
currently directing a neuroimaging initiative using our state-of-the-art
MRI facility at KKI. This initiative should lead to a more detailed
description of the structural features of the brain malformation in HPE.
The study will also enhance our understanding of the relationship between
brain structure and function. This information is essential for developing
effective management and treatment strategies for children with
holoprosencephaly and related brain malformations. Other Carter Center research interests that parents and their children
may be invited to participate includes an international HPE registry and
database, genetic causes of HPE, an EEG study, and a neurocognitive
study. For more information, contact the KKI Carter Center at hpe@kennedykrieger.org
or call (443) 923-9132. FAMILY
SUPPORT The KKI Carter Center is one of several Carter
Centers established throughout the US by the Don and Linda Carter
Foundation. As part of this network, we are participating in several
initiatives which are focused on linking patients, families and
professionals with an interest in HPE. If you would like to participate in
the international registry or database please
contact: 
The Carter Center for
Brain Research in Holoprosencephaly and Related Brain Malformations at the Kennedy
Krieger Institute (KKI) is part of a national multicenter collaboration
providing clinical care for children with holoprosencephaly,
education/family support, and research on this rare disorder. The Kennedy
Krieger Institute is a comprehensive resource for children with
neurodevelopmental disabilities. KKI is an affiliated institution of the
Johns Hopkins University School of Medicine and The Johns Hopkins
Hospital. The Carter Center for Holoprosencephaly (HPE) is the flagship of
our Brain Malformations Center and is supported by a grant from the Don
and Linda Carter Foundation.
Nancy Clegg, RN, PhD
nclegg@tsrh.org.
OUR TEAM
Alexander H. Hoon, Jr., M.D., M.P.H., Medical Director
Dr. Alec Hoon is a developmental
pediatrician and Associate Professor of Pediatrics at the Johns Hopkins
University School of Medicine.
Dr. Hoon received a BS degree from Davidson College in 1974, and a MD degree from the University of Pittsburgh in 1978. After a pediatric residency at Kosair-Children’s Hospital in Louisville and two years in private practice, he completed a neonatology fellowship at British Columbia Children’s Hospital and a one-year fellowship in medical genetics at the Affiliated Hospitals in Vancouver, Canada. In 1988 he came to Baltimore where he completed a fellowship in Neurodevelopmental Disabilities at Kennedy Krieger Institute (KKI), and obtained a MPH degree at Johns Hopkins Bloomberg School of Public Health. He joined the Johns Hopkins faculty and Kennedy Krieger Institute staff in 1990. In addition to serving as KKI Carter Center Medical Director, Dr. Hoon is Director of the Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine at the Kennedy Krieger Institute, and is an attending physician at Kennedy Krieger Children’s Hospital and the Johns Hopkins Children’s Center. He was awarded the 2001 William J. Hersey Prize for exceptional commitment to children with disabilities.
Dr. Hoon has published on etiological factors in cerebral palsy, quantification of the severity of functional impairment, and treatment with oral medications. His current research utilizes advanced neuroimaging techniques in the Kennedy Krieger Institute Kirby Research Center for Functional Brain Imaging to more precisely characterize brain injury. Additionally, Drs. Hoon and Stashinko are working with Dr. Amy Bastian and other neuroscientists, physical therapists and occupational therapists to develop measures to more precisely assess and quantify movement.
Elaine Stashinko, Ph.D., R.N.,
Center Director
Elaine Stashinko is the most recent member of the Carter Center team at the Kennedy Krieger Institute. She received her doctorate from the University of Pennsylvania School of Nursing with a focus on child health and research. For the last 12 years, she has been employed in joint positions at the Johns Hopkins University School of Nursing, School of Hygiene and Public Health, and the Johns Hopkins Children's Center in pediatric research and faculty roles. The scope of her teaching has ranged from undergraduate pediatric clinical instruction to courses on theory and research at the Ph.D. level. She has clinical experience in pediatric nursing in both acute care and primary care settings. Elaine has written articles and contributed to national clinical practice guideline development related to family-centered care. She is particularly interested in collaborating with the Carter Center team to implement this family-centered care philosophy within the Center's case management framework to empower families and children to achieve their highest potential and quality of life.
Eric Levey, M.D.
Eric Levey, M.D. is a general
pediatrician who recently joined the Carter Center at Kennedy Krieger
Institute. He graduated from the University of Pennsylvania School of
Medicine in Philadelphia and then moved to Baltimore for a Residency in
Pediatrics at the Johns Hopkins Hospital. He spent an additional two years
as a Fellow in General Academic Pediatrics at the Johns Hopkins University
School of Medicine and then joined the Kennedy Krieger Institute as a
faculty member in July 1999. Since finishing his residency in 1996, he has
specialized in the primary care of children with severe neurologic
disorders. He has developed a research interest in children with special
health care needs and continues to provide general pediatric services to
children with neurologic disorders, especially children with cerebral
palsy and spina bifida.
Heather Kammann, B.A LLB, Research Coordinator
Heather
is a graduate of Keele University, England with a Dual Honors Bachelor of
Arts Degree in Law and Applied Social Studies.
She completed her dissertation on the effects on families living
with Alzheimer’s Disease. After
graduating, Heather worked as a Research Assistant for the Age and
Cognitive Performance Research Center at the University of Manchester,
England. Heather is the
newest addition to the Kennedy Krieger Institute’s Carter Center, where
she works as a Research Coordinator.
Gerald Raymond, M.D.
Dr. Raymond is a trained
pediatrician, geneticist, and neurologist with special interest in
developmental and neurogenetic disorders affecting children and adults.
His work combines careful clinical analysis with technological advances in
neuroimaging, genetics and neuroscience to permit delineation and
characterization of neurogenetic disorders. His activities are at the
interface between clinical neurology and basic sciences which provide a
unique opportunity to understand the developing brain, the biological
basis of disease, and to develop new strategies for prevention and
therapy.
William Trescher, M.D.
William Trescher, M.D. is a board certified neurologist with special qualifications in child neurology and a board certified pediatrician. His certification in Neurology includes added qualifications in Clinical Neurophysiology. He is Director of Pediatric Neurology at the Kennedy Krieger Institute. His special interests include the effects of acquired injury and genetic conditions affecting the brain on child development, with a focus on epilepsy secondary to these conditions. He is the principal investigator on the Neurodevelopment of Young Males with Fragile X project at the Kennedy Krieger Institute. He also is working with a team of investigators to meld the newly developing techniques of functional neuroimaging with neurophysiological imaging for the studies of developmental brain disorders.
