Fragile X Syndrome / Lifespan Family Research / Waisman Center

Family Adaptation to Fragile X Syndrome

Principal Investigators
Collaborators
Purpose of the Study
Acknowledgements
Family Reports
Poster Presentations
Publications

Principal Investigators


Marsha Mailick Seltzer, Ph.D. Waisman Center University of Wisconsin - Madison	Jan S. Greenberg, Ph.D. Waisman Center University of Wisconsin - Madison

Collaborators

This study is funded by the National Institute of Child Health and Human Development (NICHD) and is part of the national network of NICHD-funded research centers on FXS. The other center sites are located at the University of North Carolina at Chapel Hill and the University of Kansas.

University of North Carolina

Researchers at the Carolina Fragile X Project at the University of North Carolina are conducting a 5 year-long study to develop newborn screening procedures for FXS and to understand the ramifications of this screening for families. Those researchers are:

Don Bailey, Ph.D.
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.

Debra Skinner, Ph.D.
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.

University of Kansas

Researchers at the University of Kansas are conducting a 5 year-long study to understand how mothers interact with their younger child with FXS and to evaluate the effectiveness of an intervention aimed at improving the responsivity of mothers for the outcomes of the child with FXS. Those researchers are:

Steve Warren, Ph.D.
Steven F. Warren is a senior scientist and Vice Provost for Research and Graduate Studies. He is also a Professor of Applied Behavioral Science. He was associated with Vanderbilt University's John F. Kennedy Center for Human Development for 18 years as a Professor of Special Education and Deputy Director before coming to the University of Kansas in 2000. Dr. Warren is internationally recognized for his contributions to understanding language development in children and leadership in the field of developmental disabilities. He has conducted extensive research on early communication and language intervention approaches and has published more than 120 papers, chapters, and books on these and related topics.

Nancy Brady, Ph.D.
Nancy Brady studies the development of communication and language in young children and in individuals with developmental disabilities. Her research has focused on describing development of gestures and prespeech vocalizations, beginning augmentative communication use, and negotiaitions of conversational breakdown.

Purpose of the Study

Researchers at the Waisman Center, University of Wisconsin-Madison are conducting a 5-year study focused on families who have an adolescent or adult diagnosed with the full mutation of FXS. There is little research on the experiences of families who have a son or daughter with FXS or the experiences of individuals with FXS during their adolescence or adulthood. The purpose of this study is to learn about the well-being of mothers and their sons or daughters with FXS, the day-to-day stress and care responsibilities experienced by mothers, and the impact of having a son or daughter with FXS on the broader family environment. An additional aim of the study is to learn about the quality of life of adolescents and adults with FXS in regard to their service needs, social and recreational activities, friendships, and family relationships. Families in the study will be interviewed three times (every 18 months) over 5 years. This will allow us to understand the stability and change in the lives of mothers and their son or daughter with FXS over time.

Acknowledgements

This study is funded by the National Institute of Child Health and Human Development (NICHD, P30 HD003100-S1) and is part of the national network of NICHD-funded research centers on fragile X syndrome. The other center sites are located at the University of North Carolina at Chapel Hill, the Research Triangle Institute International, and the University of Kansas. We would like to thank the National Fragile X Foundation for providing us with informational materials to share with families.

We gratefully acknowledge the support from the Graduate School of the University of Wisconsin-Madison and the Waisman Center at the University of Wisconsin-Madison (P30 HD03352). We are extremely grateful to the families who have given so generously of their time and shared their lives with us.

Family Reports

Poster Presentations

12th International Fragile X Conference
July 21 - July 25, 2010
Dearborn, Michigan

Family Social Climate and Behavior in Adolescents and Adults with FXS (pdf)
Jan S. Greenberg, Marsha Mailick Seltzer, Jason Baker, Leann Smith, Sigan Hartley, Jinkuk Hong, Leonard Abbeduto
Comparisons of Behavioral Phenotype of FXS, FXS and ASD, and ASD-only in Adolescence and Adulthood (pdf)
Leann E. Smith, Erin T. Barker, Marsha Mailick Seltzer, and Leonard Abbeduto
Understanding the Daily Stress of Mothers of Adolescents and Adults with Fragile X Syndrome (pdf)
Sigan Hartley, Marsha Mailick Seltzer, Jinkuk Hong, Jan Greenberg, Leonard Abbeduto, & David Almeida