Fragile X Project Personnel

Investigators

Don Bailey
Don is the principal investigator of the Carolina Fragile X Project. He is a Senior Scientist Emeritus at UNC and served as director of the Frank Porter Graham Child Development Institute from 1992 until 2006. Don recently joined RTI International as a Distinguished Fellow where he is a collaborator on Partnerships for Human Genomics and Molecular Epidemiology, an RTI team of interdisciplinary scientists working to unlock the mysteries of cell activity, genetic coding, and human disease. He did graduate work in early-childhood special education and taught preschoolers with disabilities for three years prior to getting his doctorate at the University of Washington. Don was born in Atlanta and grew up in South Carolina and Alabama. He is married, has three children, and enjoys running and going to the beach.

Deborah Hatton
Deborah is a Scientist at FPG and Co-Principal Investigator of the CFX Project. She received her Ph.D. in education from UNC-Chapel Hill. In addition to studying children with fragile X syndrome, her work focuses on children with visual impairments. Before joining the fragile X team in 1994, Deborah was an early interventionist and administrator of early intervention programs, taught elementary and high school, and served as director of a preschool for typically-developing children. Deborah enjoys traveling to historic sites with her husband, gardening, reading, and spending time with her daughter who attends college in South Carolina.

Jane Roberts
Jane is an Investigator at FPG and a Visiting Clinical Professor at the School of Education at UNC-Chapel Hill. She coordinated the Psychophysiological Measures of Arousal Study and works on the Early Identification, Middle School, FX Information Website, and Attention, Memory, and Executive Function projects. She is the co-director for the data collection core of the recently funded center grant examining family adaptation to fragile X. Her specific interests are physiological arousal, autism, behavior regulation, and temperament. Jane received her Bachelor's degree in psychology from Asbury College in Kentucky, her M.A. in school psychology from the University of Connecticut, and her Ph.D. in special education from UNC-Chapel Hill. Jane is married and has two sons and a daughter who keep her very busy. She loves to play and watch sports and is trying to improve her golf game.

Nancy Brady
Nancy is an associate research professor at the University of Kansas’ Schiefelbusch Institute for Life Span Studies. She studies the beginning stages of language development in children and youth with disabilities. Nancy is an investigator on the Family Adaptation to Fragile X project that is being conducted in partnership with the University of North Carolina, Chapel Hill. Nancy grew up in Palo Alto, California and earned her BA from University of California, Santa Barbara and her MA from University of Minnesota. She earned her Ph.D. from the University of Kansas and was a faculty member in the Department of Communication Disorders at the University of Minnesota before returning to Kansas in 2000. She is a certified speech language pathologist and has worked in public schools and a children’s hospital. Nancy enjoys spending time with her husband and two children, walking with “Hershey” -her chocolate Labrador retriever, shopping and reading.

Joanne Roberts
Joanne is a speech and language researcher, as well as a Senior Scientists at FPG. She directs the Carolina Communication Project, where she studies the speech and language skills of boys with fragile X syndrome, boys with Down syndrome, and typically developing boys. Her other research interests are in how otitis media (ear infections) affect children's hearing, speech, language, and academic skills and the role of language skills and child and family factors in affecting the school success of African American children. After attending Penn State University, Joanne worked as a speech-language pathologist for 6 years in the public schools, a residential school for visually impaired children, and at a university clinic. Joanne grew up in New York and New Jersey and received her PhD from Indiana University in Bloomington, Indiana. In addition to her professional interests, Joanne enjoys spending time with her wonderful family and traveling.

Penny Mirrett
Penny is a speech-language pathologist and an Investigator at teh FPG Child Development Institute. She came to FPG as Project Director for the first longitudinal Carolina Communication Study and then completed a 3-year study with the Carolina Fragile X Project of infants and toddlers with FXS. Currently she is an Investigator working with Don Bailey and Deborah Hatton on the CFXP NIH and OSEP projects investigating older children with FXS. Prior to coming to FPG in 1996, Penny was director of Pediatric Speech and Language Services at Duke Medical Center and a researcher at the Child Development Unit in Department of Pediatrics at Duke. While at Duke, Penny began her doctoral studies in Special Education at UNC-CH. To her family's great relief, she graduated in May, 1999. Before learning to say "Hey" instead of "Howdy," she was director of speech and language services at University Hospital in Denver for 17 years. Penny is a native of the southwest, growing up in Colorado and New Mexico. She earned her B.S. degree in Speech and Hearing Science from Colorado State University and her MA in Communication Disorders from the Univ. of Northern Colorado. Her primary research and clinical interests are infant assessment, craniofacial disorders, and early speech and language development. Penny lives in Durham with her husband Stan and daughter Erin. Penny loves plants, animals, reading, traveling and BMW's. She also loves to sing, but gets no encouragement whatsoever from friends or family.

Debra Skinner
Debra is a cultural anthropologist, a Senior Scientist at FPG, and Adjunct Associate Professor in the Department of Anthropology. She has conducted a number of ethnographic and multi-method longitudinal studies on families’ understandings of and responses to childhood disability and genetic disorders, including fragile X syndrome, and the broader cultural, economic and political contexts of these beliefs and practices. She has developed theoretical models and qualitative methods to assess parental beliefs; and worked to integrate qualitative and quantitative methods on large interdisciplinary and longitudinal projects focused on issues related to families, culture, and disability. Currently she works with Don Bailey on a study of parent and family well-being in FXS. She lives in the woods with her husband, three dogs and assorted wildlife, and enjoys traveling with and cooking for friends.

Peter Ornstein
Peter is a Professor of Psychology at UNC Chapel Hill. A developmental psychologist, Peter's research concerns cognitive development, especially the development of young children's memory. This work is "basic" in that it is related to children's fundamental skills for processing and remembering information, but it is also "applied" in that it has implications for assessing the abilities of young children to provide testimony in legal situations. Peter has collaborated with Joanne Roberts in her communication studies by looking at the ability of young children with FX to remember activities and events. Peter worked on the Attention, Memory, and Executive Function study and was responsible for the development and analyses of the memory tasks included in that study. In addition to his academic interests, Peter enjoys hiking and canoeing, as well as spending time with his wife, daughters and sons-in-law, and granddaughters.

Joe Piven
Joe is a Professor of Psychiatry, Pediatrics, and Psychology, Director of the UNC STAART Autism Research Center, and the Director of the UNC Neurodevelopmental Disorders Research Center. Dr. Piven’s current NIH-funded research includes molecular and behavioral genetics and neuroimaging studies aimed at understanding the pathogenesis of autism and fragile X syndrome

Stephen Hooper
Steve is a child neuropsychologist at UNC's Clinical Center for the Study of Development and Learning. He is interested in neurocognitive development, social-emotional development and functioning, and the interaction of neurocognitive factors with social-emotional functioning. Steve graduated from Junianta College with a bachelor's degree in two fields: psychology and education. He then studied at Western Kentucky University, where he received a master's degree in clinical psychology and school psychology. He earned hisdoctorate from the University of Georgia in school psychology. In addition to his degrees, Steve participated in a clinical child psychology internship at Vanderbilt University's School of Medicine and was a postdoctoral fellow in child neuropsychology at Brown University's School of Medicine. He enjoys spending time with his wife and two children.

Jennifer Schaaf
Jennifer is an Investigator at the Frank Porter Graham Child Development Center. She received a bachelor's degree in Psychology with a concentration in Developmental Disabilities from the University of California at Los Angeles where she also worked as a teaching assistant at a residential facility for developmentally disabled persons. Later she received both an MA and PhD in Cognitive Psychology from the University of California at Davis. In addition to her work with children with fragile X syndrome, Jennifer's interests include memory development, cognitive development, and children's abilities as eyewitnesses. She has co-authored several chapters and articles that utilize research findings to address applied issues in forensic child abuse cases.

John Sideris
John is an Investigator in the Data Management and Analysis Core at FPG. He received his Ph.D. in Quantitative Psychology from UNC-Chapel Hill in 2006. In addition to his work with the Fragile X Project, John has been involved in research on speech and language and on early child care. He has a strong interest in measurement with particular focus on Factor Analysis and Item Response Theory. Outside of work, he enjoys spending time with his two children and has visions of becoming a middle-aged track star.

Steve Warren
Steven is presently the Director of the Schiefelbusch Institute for Life Span Studies and Professor of Applied Behavior Science at the University of Kansas. He received his Ph.D. in developmental psychology at KU in 1977 and served on the faculty of the Department of Special Education at Vanderbilt University in Nashville from 1982 through 1999 prior to returning to Kansas in 2000. He has conducted extensive research on early communication and language intervention across a range of disabilities for the past 30 years and has published more than 100 papers and 10 books on these and related topics. Steve is married and has two daughters. In his free time he enjoys playing golf (poorly) and hiking.

Anne Wheeler
Anne received her B.A. in Psychology and Anthropology from Southern Methodist University in 1993, and her Ph.D. in School Psychology from the University of North Carolina at Chapel Hill in 2004. While in graduate school she completed a specialized training program for leadership development in Early Intervention and Family Services. Her research interests include social/emotional development and temperament in young children, family and maternal well-being among families raising a child with a disability, mother-child interaction patterns, and the development of a strength-based/positive psychology focus in child and family research.[ In addition to her work with the Carolina Fragile X Project, Anne works on Project EMERGE, a study of early literacy in children with visual impairments and leads a study on learning profiles in children with Prader-Willi Syndrome at UNC’s Center for Development and Learning. In her spare time Anne practices and teaches yoga and meditation techniques, and occasionally puts in some time on the softball field!]

Staff

Dawn Edgerton
Dawn is in charge of data management for CFXP. She prepares data to be entered, creates summary scores, and also performs error checks. She assists investigators in the analysis of the data under the direction of statisticians, part of the computer and statistics core of FPG. Dawn graduated from UNC in 1982 with a degree in mathematical sciences and a computer science option. She began working at FPG in 1997 after years of experience as a programmer in various capacities and staying home with her 3 children. Dawn also works in the school system as a guardian ad litem, a court advocate for abused and neglected children.

Julie Hammer
Julie joined the Carolina Fragile X Project in July 2003 as a data manager on the Attention, Memory, and Executive Function study. Julie is originally from St. Louis, and received her B.A in Psychology from the University of North Carolina at Chapel Hill in 2000. Prior to pursuing her graduate studies toward a Ph. D. in School Psychology, Julie worked in Atlanta on the SAFETY project, assessing women and children who had witnessed and experienced intimate partner violence. Additionally, she also worked at a lab at Emory University administering neuropsychological tests to children with Attention Deficit Hyperactivity Disorder. Julie is specifically interested in looking at attention in children with developmental disabilities. She eventually hopes to work in a clinical setting to help children with emotional and behavioral problems. Julie lives in Chapel Hill with her husband and her dog, Buddy. During her free time, Julie loves to go running, travel, and spend time with her husband, family, and friends.

Anna James
Anna joined the Carolina Fragile X Project in August 2006 as a graduate research assistant for the data collection core. She is originally from Ontario, Canada, and earned her B.A. in Psychology from the University of Maine in May 2002. She is currently working toward her doctorate degree in School Psychology at the University of North Carolina at Chapel Hill. Prior to pursuing her graduate studies Anna served in AmeriCorps as a Community Outreach Member for the Hillsborough Reads Program in Tampa, FL. Anna is specifically interested in at risk children and families as well as family advocacy. Anna lives in Durham, NC. During her free time she enjoys running, travel, baking, and participating in church activities.

Heather Macgruder
Heather joined the Carolina Fragile X Project in September 2004 as an undergraduate research assistant for the Attention, Memory and Executive Function Study. She graduated from the University of North Carolina at Chapel Hill in May 2005 with a B.A. in Psychology and is currently working with the Family Adaptation to Fragile X Study as a research assistant. This includes completing assessments and managing data for the Center. After working for several years, she hopes to attend graduate school in either clinical or developmental psychology. She is originally from Asheville, NC and enjoys hiking, shopping, and visiting with her family and friends.

Jean Mankowski
Jean, a doctoral candidate in school psychology at UNC-Chapel Hill, received a BA in psychology from Lehigh University in Bethlehem, PA. She joined the CFXP in 2001 and has worked in various data management and assessment roles on both the Attention Memory and Executive Functioning and Family Adaptation to FXS grants. She moved to New York for a year in 2004 to complete her pre-doctoral internship at Children’s Village in Dobbs Ferry, NY, where she worked with children with behavioral and emotional difficulties in a residential treatment center. Upon returning to Chapel Hill, Jean joined the Family Adaptation Study conducting assessments while completing her dissertation. Her specific research interest includes well-being in mothers of children with developmental disabilities. She plans on working with families and children in various therapeutic capacities after finishing her degree. Jean lives in Chapel Hill with her husband and daughter and spends her free time gardening and cooking. Jean and her husband (who went on their first date in Singapore) have the "travel bug" and are always planning their next adventure.

Nicole Mason
Nicole joined the Carolina Fragile X Project in 2005 as a research assistant on the project, Family Adaptation to Temperament and Challenging Behavior in FXS. Since graduating from the University of North Carolina in May 2005 with her B.A. in psychology, Nicole has worked as a full-time as an assessor and coder. After working for a few years, she plans to return to school to obtain a nursing degree and hopes to work in pediatrics. Nicole is originally from Sarasota, Florida. When she's not working, she can usually be found reading a book or with her horse. She enjoys competitive horse-back riding, primarily jumpers and eventing.

Audra Sterling
Audra is a graduate student in the Cognitive Psychology doctoral program at the University of Kansas. She has been working on the Family Adaptation to Fragile X project since the fall of 2003. She is the Kansas lab manager, a coder and an assessor. Audra is originally from Indiana, and she received her B.A. from the University of Notre Dame in 2002. She worked in several research labs during her undergraduate studies. Audra’s primary research interests involve the language development of children with FXS and Down syndrome, as well as mother-child interactions. In her spare time, Audra enjoys running, reading, and spending time with family and friends.

Lori Wiebold-Lippisch
Lori is currently finishing her Ph.D. in Sociology at the University of Kansas. A native Midwesterner, she earned her BA and MA in sociology at the University of Northern Iowa. She came to the Fragile X project with prior research experience and a committed interest in family care work and policies. She enjoys traveling and seeing new places. Outside of work, she enjoys inviting friends over for dinner, conversation and games. She is also a proud auntie and travels "home" to Iowa to see her niece and nephew.

Victoria Taylor-Holloway
Taylor joined the Carolina Fragile X Project as a volunteer September 2005. In September 2006, she became a full time research assistant for the project, Family Adaptation to Temperament and Challenging Behavior. She graduated from the University of North Carolina at Wilmington in May 2004 with a B.A. in Psychology. Taylor is also a graduate student at North Carolina Central University getting her MA in Clinical Psychology. She is from Spring Hope, a small town in North Carolina, and enjoys traveling with her new husband.

Gwen Van Ark
Gwen began work as the administrative coordinator for the Carolina Fragile X Project in March 2004. Prior to joining the staff of the CFXP, Gwen was a Family and Developmental Specialist based at the Center for Development and Learning. In this role, she worked for the Hospital Early Intervention Project at UNC Hospitals here at the University of North Carolina at Chapel Hill. Gwen holds a B.A. (1985) in Art and Art History from Hope College, where she concentrated her studies in printmaking and gallery management. After several years of work at her home based art business and as a teacher at Family Preschool in Chapel Hill, she enrolled in Graduate School at UNC-Chapel Hill and obtained her M.Ed. in 1999. She also holds an endorsement as a Social Inclusion Facilitator. Outside of work, Gwen enjoys spending time with her husband and son. She also is an avid triathlete, regularly competing in running and biking events throughout North Carolina. Gwen continues to engage in art-related projects and events when time permits.

Collaborators

Renee Clark
Renee is the Coordinator for the Research Registry for Autism and Fragile X Syndrome at the Neurodevelopmental Disorders Research Center at UNC. Before joining the Registry staff, Renee worked at the Frank Porter Graham Child Development Institute on two major projects, the Carolina Fragile X Project and the Early Childhood Follow Through Institute. In addition to conducting developmental assessments with children and visiting families, her favorite research activities have included measuring classroom engagement, observing teaching practices, conducting instructional studies, and studying inclusion of elementary children with disabilities. Renee graduated from Meredith College, in Raleigh, NC with a BA in Social Work. She earned her Master's degree in Social Work from UNC. Her prior experience includes working with young children with disabilities, adolescents with autism, and adults dually diagnosed with mental retardation and mental illness.

Gary Mesibov
Dr. Gary Mesibov has been involved with CFXP through collaborative projects studying fragile X and autism. He attended Stanford University for his undergraduate degree, the University of Michigan for his master's, and received his Ph.D. from Brandeis University. A postdoctoral fellowship brought him to UNC, where he is currently the director of Division TEACCH. Gary's major research interest is autism.

Steve Reznick
Steve worked with the infant study team, developing measures to be used for early detection of fragile X. His expertise is in infant cognitive ability, particularly working memory, visual expectations, and language. He helped us adapt laboratory tasks for use with the participants in our studies. Currently, Steve is an investigator on Project 3. Steve received his master's degree at Wake Forest University and his Ph.D. at the University of Colorado at Boulder. He was research director of the Harvard Infant Study and an associate professor in psychology and child study at Yale before coming to UNC. Currently Steve is professor of psychology and program director of developmental psychology at UNC, as well as holds appointments at both the FPG Child Development Center and the Center for Developmental Science. Ourside of work, Steve's main interests are tennis, jogging, and reading; his main extracurricular energies are devoted to his wife and daughter. It has been reported from reputable sources that he loves hot weather and is an avid fan of Carolina basketball.

Home | Overview | Research | Findings | Case Studies | Education | Publications | Personnel | Resources