Williams Syndrome Registry home page

Jessica Waxler, MS

Jessica Waxler, MS
Genetic Counselor
Williams Syndrome Patient Registry Coordinator

Jessica received her Master's degree in Genetic Counseling from Virginia Commonwealth University in 2008. She is excited to be working with Dr. Pober on projects such as the WSPCR Registry and to help improve the lives of those with Williams syndrome. Jessica also hopes to pursue her particular interest in genetics education for children and families.

Barbara Pober, MD

Barbara Pober, MD
Medical Geneticist
Department of Pediatrics, Genetics
Massachusetts General Hospital
Associate Professor of Pediatrics
Harvard Medical School

Barbara R Pober, MD, is a clinical geneticist who has provided care for persons with Williams syndrome for over 20 years. She started and then directed one of the first interdisciplinary Williams syndrome programs in the United States. She continues to evaluate individuals of all ages with Williams syndrome at the Massachusetts General Hospital in Boston, MA.

Dr Pober has published numerous articles about the medical status of those with Williams syndrome, and has lectured on Williams syndrome to both families and medical professionals. Increasingly, her interests are turning toward treatments and toward finding ways to improve the lives of individuals with Williams syndrome. Dr Pober is a long-standing member of the WSA Medical Advisory Board. Her current professional appointments in Boston, MA are: Pediatrician at the Massachusetts General Hospital, Geneticist at the Children’s Hospital Boston, and Associate Professor of Pediatrics at Harvard Medical School.

Kristen Dean, MS

Kristen Dean, MS
Genetic Counselor
Williams Syndrome Patient Registry Coordinator

Kristen received her Master’s degree in Genetic Counseling from Brandeis University in Waltham, MA. She has been a part of the Williams Clinic at Massachusetts General Hospital since August 2007, working with Dr. Pober to help children and adults with Williams syndrome live healthy, active lives. Kristen also helps plan and maintain studies relating to Williams syndrome, such as the WSPCR Registry. Kristen is the prior WSPCR Registry Coordinator and still consults with us.

Meet the Professional Advisory Board

Terry Monkaba, mba

Terry Monkaba, MBA
Executive Director, Williams Syndrome Association

Terry Monkaba holds a Master’s Degree in Business Administration from Oakland University. She and her husband joined the Williams Syndrome Association when their oldest son Ben was diagnosed with WS in 1986. She has been involved with the administration of the WSA since 1990, serving as regional director, Board member, Board President, and since 1995, Executive Director. During that time she has had the privilege of helping to grow the Association from a small parent support group operated out of the Board President’s kitchen to a thriving non-profit with a million-dollar endowment, operating several annual programs for individuals with Williams syndrome.

Terry helped create and is on the Advisory Board of the Berkshire Hills Music Academy, a two-year residential, post-secondary program in Massachusetts, and is working with families in Japan and other countries to create better programs for families of individuals with WS worldwide.

Karen Levine, PhD

Karen Levine, PhD
Psychologist
Instructor, Harvard Medical School
Clinical Director Autism and Developmental Disabilities Services
Center for Child and Adolescent Development, Cambridge Health Alliance
Private practice: Helping Children with Challenges, Lexington, MA

Karen Levine is a Developmental Psychologist, an Instructor at Harvard Medical School, Clinical Director of the Autism and Developmental Disabilities program at Cambridge Health Alliance, and is in private practice. She has a special interest in young children with social and emotional challenges, anxiety, developmental delays, and/or emotional regulation difficulties. Dr Levine provides diagnostic evaluations, short-term treatment, IEP consultation, and emotional and behavioral consultation to families as well as to schools.

Dr Levine was co-director of the Boston Children’s Hospital Williams Syndrome Program in the early nineties. She has published numerous articles on Williams syndrome in the medical literature and in the WSA newsletter, Heart to Heart. Her book, Replays: Using Play to Enhance Emotional and Behavioral Development for Children with Autism Spectrum Disorders, co-authored with Naomi Chedd, has recently been published.

Robert Marion, MD

Robert Marion, MD
Medical Geneticist
Department of Pediatrics, Chief, Genetics and Developmental Medicine Children’s Hospital at Montefiore
Professor of Pediatrics & Obstetrics and Gynecology and Women’s Health
Ruth L. Gottesman Professor of Developmental Pediatrics
Director, Rose F. Kennedy University Center for Excellence in Developmental Disabilities
Albert Einstein College of Medicine

Robert Marion, a clinical geneticist, founded the Williams Syndrome Center at the Children’s Hospital at Montefiore (CHAM) in the Bronx, New York, in 2004. He is Chief of the Divisions of Genetics and of Developmental Medicine at CHAM and is Director of CHAM’s Center for Congenital Disorders. He is also Director of the Rose F. Kennedy University Center for Excellence in Developmental Disabilities, the Children’s Evaluation and Rehabilitation Center at Einstein, and of Medical Genetics at Blythedale Children’s Hospital in Valhalla, New York. In addition to his appointments at Einstein, he is a member of the faculty of the Human Genetics graduate program at Sarah Lawrence College in Bronxville, NY.

Dr. Marion’s clinical and research interests include the natural history and genetic basis of multiple malformation syndromes, including Williams syndrome, velocardiofacial syndrome, neurofibromatosis and others. He has published extensively in the medical literature in these areas and is the author of six books, including The Intern Blues, The Boy Who Felt No Pain, and Learning to Play God.

Carolyn Mervis, PhD

Carolyn B. Mervis, PhD
Distinguished University Scholar and Professor
Dept. of Psychological and Brain Sciences
University of Louisville

Carolyn Mervis, Ph.D., is a Distinguished University Scholar and Professor of Psychological and Brain Sciences, and Associate in Pediatrics, University of Louisville, Louisville, KY. Dr. Mervis has been conducting research on Williams syndrome for 18 years. Her primary interests are in language and cognitive development; temperment and personality; the longitudinal course of development of individuals who have Williams syndrome; and genotype/phenotype relations. Her research spans all age levels, from infancy through adulthood. Dr. Mervis first described the cognitive profile for WS that is commonly accepted today.

Colleen Morris, MD

Colleen Morris, MD

Colleen A. Morris, M.D., is a clinical geneticist who has been conducting research on the natural history and genetics of Williams syndrome since 1985. She is Chief of the Genetics Division and Professor of Pediatrics, Pathology and Lab Medicine at the University of Nevada School of Medicine in Las Vegas. She is the clinician who was part of the research team that discovered the genetic cause of Williams syndrome.

Dr. Morris' research focuses on determining the role of the deleted genes on chromosome seven in various symptoms found in WS. She also studies individuals with symptoms overlapping Williams syndrome who do not have a chromosome seven deletion. Dr. Morris is a long-standing member of the WSA Medical Advisory Board.


	Site Home For Families About Joining Benefits & Risks FAQs Join Now Withdraw For Researchers FAQs Simple Searches Study Proposals Site Login Already Registered Your Home Log Out About Us Meet the Staff Contact Us Definitions			About Us: Meet the Staff Jessica Waxler, MS Jessica Waxler, MS Genetic Counselor Williams Syndrome Patient Registry Coordinator Jessica received her Master's degree in Genetic Counseling from Virginia Commonwealth University in 2008. She is excited to be working with Dr. Pober on projects such as the WSPCR Registry and to help improve the lives of those with Williams syndrome. Jessica also hopes to pursue her particular interest in genetics education for children and families. Barbara Pober, MD Barbara Pober, MD Medical Geneticist Department of Pediatrics, Genetics Massachusetts General Hospital Associate Professor of Pediatrics Harvard Medical School Barbara R Pober, MD, is a clinical geneticist who has provided care for persons with Williams syndrome for over 20 years. She started and then directed one of the first interdisciplinary Williams syndrome programs in the United States. She continues to evaluate individuals of all ages with Williams syndrome at the Massachusetts General Hospital in Boston, MA. Dr Pober has published numerous articles about the medical status of those with Williams syndrome, and has lectured on Williams syndrome to both families and medical professionals. Increasingly, her interests are turning toward treatments and toward finding ways to improve the lives of individuals with Williams syndrome. Dr Pober is a long-standing member of the WSA Medical Advisory Board. Her current professional appointments in Boston, MA are: Pediatrician at the Massachusetts General Hospital, Geneticist at the Children’s Hospital Boston, and Associate Professor of Pediatrics at Harvard Medical School. Kristen Dean, MS Kristen Dean, MS Genetic Counselor Williams Syndrome Patient Registry Coordinator Kristen received her Master’s degree in Genetic Counseling from Brandeis University in Waltham, MA. She has been a part of the Williams Clinic at Massachusetts General Hospital since August 2007, working with Dr. Pober to help children and adults with Williams syndrome live healthy, active lives. Kristen also helps plan and maintain studies relating to Williams syndrome, such as the WSPCR Registry. Kristen is the prior WSPCR Registry Coordinator and still consults with us. Meet the Professional Advisory Board Terry Monkaba, mba Terry Monkaba, MBA Executive Director, Williams Syndrome Association Terry Monkaba holds a Master’s Degree in Business Administration from Oakland University. She and her husband joined the Williams Syndrome Association when their oldest son Ben was diagnosed with WS in 1986. She has been involved with the administration of the WSA since 1990, serving as regional director, Board member, Board President, and since 1995, Executive Director. During that time she has had the privilege of helping to grow the Association from a small parent support group operated out of the Board President’s kitchen to a thriving non-profit with a million-dollar endowment, operating several annual programs for individuals with Williams syndrome. Terry helped create and is on the Advisory Board of the Berkshire Hills Music Academy, a two-year residential, post-secondary program in Massachusetts, and is working with families in Japan and other countries to create better programs for families of individuals with WS worldwide. Karen Levine, PhD Karen Levine, PhD Psychologist Instructor, Harvard Medical School Clinical Director Autism and Developmental Disabilities Services Center for Child and Adolescent Development, Cambridge Health Alliance Private practice: Helping Children with Challenges, Lexington, MA Karen Levine is a Developmental Psychologist, an Instructor at Harvard Medical School, Clinical Director of the Autism and Developmental Disabilities program at Cambridge Health Alliance, and is in private practice. She has a special interest in young children with social and emotional challenges, anxiety, developmental delays, and/or emotional regulation difficulties. Dr Levine provides diagnostic evaluations, short-term treatment, IEP consultation, and emotional and behavioral consultation to families as well as to schools. Dr Levine was co-director of the Boston Children’s Hospital Williams Syndrome Program in the early nineties. She has published numerous articles on Williams syndrome in the medical literature and in the WSA newsletter, Heart to Heart. Her book, Replays: Using Play to Enhance Emotional and Behavioral Development for Children with Autism Spectrum Disorders, co-authored with Naomi Chedd, has recently been published. Robert Marion, MD Robert Marion, MD Medical Geneticist Department of Pediatrics, Chief, Genetics and Developmental Medicine Children’s Hospital at Montefiore Professor of Pediatrics & Obstetrics and Gynecology and Women’s Health Ruth L. Gottesman Professor of Developmental Pediatrics Director, Rose F. Kennedy University Center for Excellence in Developmental Disabilities Albert Einstein College of Medicine Robert Marion, a clinical geneticist, founded the Williams Syndrome Center at the Children’s Hospital at Montefiore (CHAM) in the Bronx, New York, in 2004. He is Chief of the Divisions of Genetics and of Developmental Medicine at CHAM and is Director of CHAM’s Center for Congenital Disorders. He is also Director of the Rose F. Kennedy University Center for Excellence in Developmental Disabilities, the Children’s Evaluation and Rehabilitation Center at Einstein, and of Medical Genetics at Blythedale Children’s Hospital in Valhalla, New York. In addition to his appointments at Einstein, he is a member of the faculty of the Human Genetics graduate program at Sarah Lawrence College in Bronxville, NY. Dr. Marion’s clinical and research interests include the natural history and genetic basis of multiple malformation syndromes, including Williams syndrome, velocardiofacial syndrome, neurofibromatosis and others. He has published extensively in the medical literature in these areas and is the author of six books, including The Intern Blues, The Boy Who Felt No Pain, and Learning to Play God. Carolyn Mervis, PhD Carolyn B. Mervis, PhD Distinguished University Scholar and Professor Dept. of Psychological and Brain Sciences University of Louisville Carolyn Mervis, Ph.D., is a Distinguished University Scholar and Professor of Psychological and Brain Sciences, and Associate in Pediatrics, University of Louisville, Louisville, KY. Dr. Mervis has been conducting research on Williams syndrome for 18 years. Her primary interests are in language and cognitive development; temperment and personality; the longitudinal course of development of individuals who have Williams syndrome; and genotype/phenotype relations. Her research spans all age levels, from infancy through adulthood. Dr. Mervis first described the cognitive profile for WS that is commonly accepted today. Colleen Morris, MD Colleen Morris, MD Colleen A. Morris, M.D., is a clinical geneticist who has been conducting research on the natural history and genetics of Williams syndrome since 1985. She is Chief of the Genetics Division and Professor of Pediatrics, Pathology and Lab Medicine at the University of Nevada School of Medicine in Las Vegas. She is the clinician who was part of the research team that discovered the genetic cause of Williams syndrome. Dr. Morris' research focuses on determining the role of the deleted genes on chromosome seven in various symptoms found in WS. She also studies individuals with symptoms overlapping Williams syndrome who do not have a chromosome seven deletion. Dr. Morris is a long-standing member of the WSA Medical Advisory Board.
	Last Updated: 02 Sep 2010 4AM EDT