Current Williams Syndrome Research
Development of Therapy for Fears and Anxieties of Children with Williams syndrome
Children with Williams syndrome often experience considerable anxiety and associated emotional dysregulation related to specific objects, sounds, or experiences. There are few treatments developed for young children with anxiety difficulties, and even fewer evaluated for use with children with developmental disabilities. Dr. Karen Levine and Dr. Bonnie Klein-Tasman, together with graduate students at the UWM Child Neurodevelopment Research Lab have worked together to develop a manual and video examples to help guide therapists to use a play-based approach to reducing fear and anxiety. We so appreciate the families who have participated in this research to date. Parents brought their children to UWM for an weekend of therapy sessions. They were interviewed about their child’s anxiety completed questionnaires and ratings about their child’s behavior, anxiety, and fears before and after the weekend visit to UWM.
Right now, we are working on finalizing our manual and video examples based on families of children with Williams syndrome who participated in our research with their children with Williams syndrome with fears and anxieties related to brushing hair, brushing teeth, blenders, vacuum cleaners, hand dryers and other situations. These will soon be made available to community clinicians to help them learn the intervention.
Please check back for updates. While we are not recruiting additional participants at this time, our next stage will be to get feedback from community clinicians about our training materials, and then involving community clinicals in learning this approach with families local to them; please check back for updates.
If you work with a child with Williams syndrome who has strong emotional responses to specific situations or objects and would like access to our Video Glossary illustrating this intervention, please complete this survey and we will be in touch when the glossary is ready for use.
Feel free to email us at cnrl@uwm.edu with any questions.
This research is supported by a grant from the Williams Syndrome Association (#WSA0110 and #WSA0112) and the private foundation Lucidus Solutions.
Addressing Healthcare Disparities Among Families of Black Children with Williams Syndrome: Development of a Black Participatory Research Approach
Hello Parents, Caregivers and Family Members of Children with Williams Syndrome!
We are seeking parents, caregivers and family members of children with Williams syndrome who might be interested in partnering with us in a future research project about the experiences, priorities, and needs of Black families of children with Williams syndrome. Specifically, we would like to center and amplify the voices of Black families with children with Williams syndrome. Previous research experience is not required.
This project idea came about through one of our graduate students, Brianna Young, who identifies as Black and Native American. Brianna is excited to begin partnering with Black families directly to ensure a seat at the table for interested parents, caregivers and family members. We believe that family members hold invaluable expertise from first-hand lived experiences, and therefore hope to approach research as a collaborative partnership. We aim to take a supportive role and empower Black families to direct the focus of this research. For this research, our goal is to move away from the traditional model of “researchers as experts” and instead move toward the model of Black families as experts.
If you feel you might be interested in partnering with us, please complete this survey by scanning this QR code and providing your contact information:
We will then plan a series of virtual meetings (likely about once per month at first) to begin to get to know one another and work on developing this research together. We look forward to connecting with you soon!
Please complete this brief form to be kept informed of our activities.
This research is supported by a grant from the Williams Syndrome Association (#WSA0110 and #WSA0112) and the private foundation Lucidus Solutions.