WS - Williams Syndrome Program

2012

Overall Description of Williams Syndrome Program 1. Need - The Williams Syndrome Program at Nisonger Center fulfills the following needs of individuals with Wiliams syndrome: 1) Intervention-based research, 2) Multi-disciplinary care that addresses the medical, psychological, and educational needs of individuals with Williams syndrome, 3) Increased awareness of Williams syndrome among medical professionals, and 4) Support/education for families of those who have a child/adult with Williams syndrome. 2. Overall goals and objectives - Our first goal is to conduct intervention-based research that can benefit the lives of individuals with Williams syndrome. Our objectives under this goal are to conduct/collaborate on studies evaluating hearing function, medication usage and side effects, effects of music on memory, mathematical skills, and pragmatic language. Our second goal is to provide a multi-disciplinary clinic for individuals with Williams syndrome. Our objective is to have a monthly clinic available for individuals with Williams syndrome, which will be staffed by a developmental behavioral pediatrician, clinical psychologist, speech/language therapist, physical therapist, occupational therapist, and genetics counselor. Our third goal is to provide support and education for families who have a child/adult with Williams syndrome. Our objective is to organize and facilitate family support group meetings approximately 2 times per year. 3. Unique features - The Williams Syndrome Program at Nisonger Center is unique in that it is multi-faceted in its approach to working with individuals with Williams syndrome. Our program addresses research needs, clinic needs, and family support needs, which is unique among other centers who provide services for individuals with Williams syndrome. Our clinic, which is based in Ohio, has already seen clients from states as distant as Illinois and Colorado, which highlights the need for such services. 4. Expected benefits - Individuals with Williams syndrome and their families will benefit from the results of the intervention-based research in many aspects of their lives. They will also benefit from the multi-disciplinary clinic because they are able to see professionals who are familiar with Williams syndrome and who meet together to discuss recommendations that are team-based. Finally, the support group meetings will benefit both the individuals with Williams syndrome and their families by providing information and social support for the parents, and providing opportunities for social relationships for the individuals with Williams syndrome.

Williams Syndrome

Training Trainees, Performing Research or Evaluation

Education & Early Intervention, Health-Related Activities, Quality of Life

Students/Trainees (long or intermediate trainees), Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Children/Adolescents with Disabilities/SHCN

Geographic Areas, Rural/Remote, Specific Groups

State, Regional, National

N/A