Fragile X syndrome is the leading inherited cause of intellectual disability, as well as the source of many cases of learning disabilities and autism. The syndrome affects both males and females, although males are typically more severely affected. In addition to learning difficulties, children with fragile X often suffer from hyperactivity, social anxiety, hypersensitivity to sensory stimuli, and autism and autistic-like behaviors, all of which limit their social and academic progress, create challenges for teachers, and are a source of stress and uncertainty for their families.
Fragile X is caused by a repetitive genetic error on the long arm of the X chromosome. The mutation is in a single gene called FMR1. A small set of nucleotides (the building blocks of DNA) are repeated excessively, disrupting the structure of the gene and preventing the production of its normally encoded protein (FMRP). The mutation is passed through families and can occur more frequently or severely in future generations.
The Waisman Center Clinics offer specialized diagnostic and assessment services to individuals who have, or are suspected of having a variety of developmental disabilities including fragile X syndrome. The clinic team works closely to provide comprehensive and integrated evaluations.
The National Fragile X Research Registry’s goal is to forward fragile X research by connecting scientists with a large number of families affected by fragile X syndrome and its associated conditions. This registry is a growing collaboration between the Waisman Center and the Carolina Institute on Developmental Disabilities at the University of North Carolina-Chapel Hill.
The mission of the Waisman Center, University Center for Excellence in Developmental Disabilities (UCEDD) is to support the full inclusion and self determination of people with developmental disabilities and their families. Autism is a major area of focus.
WISADDS is a multi-source public health surveillance project that monitors the prevalence of autism spectrums disorders (ASDs), cerebral palsy (CP), and co-occurring intellectual disability (ID) in 8-year-old children within a 10-county area in southeastern Wisconsin.
Learn about the latest advances in cerebral palsy research and clinical services and hear from a panel of experts-individuals with cerebral palsy and family members. Visit the archives page to view past presentations and download handouts.
Katherine C. Hustad, PhD, leads several longitudinal studies focused on communication development in children with CP. These studies aim to characterize changes in speech and language abilities from infancy through adolescence in this heterogeneous population.
Cerebral Palsy News
Early interventions in children with cerebral palsy can be pivotal to improving motor and cognitive outcomes. The focus of this study is to longitudinally assess, over the first two years of life, the recovery and development of the infant brain after early stroke or brain bleed.
Twins Sebastian and Charlotte Sundly are quite the contrasting pair, yet they balance one another out perfectly in some interesting and unexpected ways.
A peek into a collection of newspaper clippings about Ludell Swenson reveals the life of an extraordinarily accomplished person: marathoner, competitive tournament bowler, outspoken social services advocate. But what stands out the most is his …
By Adityarup “Rup” Chakravorty A new study of children with cerebral palsy could help ease the speech and language challenges many of these children face as they get older. Published in the journal Developmental Medicine …
It has been said that communication is the essence of human life. In fact, our ability to communicate an unlimited number of thoughts and ideas separates humans from all other creatures.
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Resources & Services
Waisman Resource Center
For more information about Waisman Resource Center please contact:
800-532-3321 or 608-265-8610
Community Outreach for Children with Challenging Behaviors 608.265.9438; cow.waisman.wisc.edu/ties
Community Training, Intervention and Evaluations Services (TIES) is an outreach program for children and adults with developmental disabilities who present various challenging behaviors, including withdrawal, aggression and self-injury. The mission of Community TIES is to address behavioral, psychological, and emotional needs using therapeutic approaches that insure continued participation in the community. TIES provides counseling, crisis response, psychiatric consultation, parent education and support, and training for personnel and program consultation in local human service agencies. Directed by Josh Lapin, MSW, and funded by Dane County, this program maintains an active caseload of approximately 250 children and adults in Dane County.