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.
Clinical Services
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.
National Fragile X Research Registry
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.
UCEDD
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.
Epidemiology of Cerebral Palsy
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.
Southern Regional Center for CYSHCN
The Wisconsin Children and Youth with Special Health Care Needs (CYSHCN) Program regional center located at the Waisman Center.
Cerebral Palsy Day with the Experts
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.
Research Activities
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 Related Studies Recruiting
Cerebral Palsy News
Let’s talk numbers: Epidemiology of intellectual and developmental disabilities research at the Waisman Center
In 2001, newborn screening of Hmong babies had an alarming number of positive results for an enzyme deficiency called MBADD.
From brain stimulation to speech and language interventions, Waisman researchers are making strides to better understand and treat individuals with cerebral palsy
More than 10,000 children are born each year with cerebral palsy (CP) making it the most common motor disability in childhood.
The Waisman Center’s comprehensive care and strides toward early interventions for children with cerebral palsy: Clinics and outreach
The clinics and the research laboratories of the Waisman Center intertwine to care for individuals with cerebral palsy. The mission is one: to improve the outcomes for individuals with cerebral palsy.
Understanding recovery and development in children
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.
Waisman CP Clinic strikes a balance
Twins Sebastian and Charlotte Sundly are quite the contrasting pair, yet they balance one another out perfectly in some interesting and unexpected ways.
- More Cerebral Palsy posts
Resources & Services
Waisman Resource Center
For more information about Waisman Resource Center please contact:
800-532-3321 or 608-265-8610
wrc@waisman.wisc.edu
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.