Current Research Studies 

Home Maths Experience (HoME) Intervention Study:Improving Mathematical Abilities in Children with Williams Syndrome. Ages 5 – 11

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Mathematical Development of Individuals with Williams Syndrome. Ages 5 – 8 years

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The Role of Parenting and Emotional Understanding in WS. Ages 4-10 years 

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mathMIND Study: Early Pathways to Independence in Numeracy for Children with Genetic Syndromes. Ages 4-9 years  

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Perceptual Capacity in Adults.   Ages 18 – 40 years

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Motor Skill Learning, Physical Activity and Mental Health in Autism Spectrum Disorder, Down Syndrome, and Williams Syndrome. Ages 7 – 16 years

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The social world of people with WS – their online approach, behaviour and social vulnerability online and in person. Ages 12 – 25

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Study

The Wisdom (Development in Williams Syndrome) study

The Wisdom study started in 2018, when Prof Jo Van Herwegen was given access to the data gathered by the members of staff who worked with the late Professor Annette Karmiloff-Smith.

This data started in the 90s and spans about 30 years. In addition, over nearly 20 years Jo has collated extensive data from participants with WS in the UK across different research activities as well as the WSF clinic. We would like to extend this research study in order to gain a much greater understanding of our members over time so that we can evidence the needs and challenges and ultimately provide support and materials for those needs.

We are asking for all our members to join this study and complete the online survey below. We will then re-circulate the survey periodically so that we can capture the changes over time and really understand the WS life-time journey.

Wisdom Study

Research Results

Report launch: Shape Research, Change Lives: setting priorities in genetic syndrome research.

We compared the research landscape to research priorities for individuals with Down syndrome (DS), Fragile X syndrome (FXS), and Williams syndrome (WS). Throughout we worked with an expert steering group and advisory groups with lived experience.

£26 million was spent on DS, FXS and/or WS research between 2013 and 2022. This is <1% of funder portfolios and represents ~£35 per person with genetic syndrome per year. The DS, FXS and WS communities weighted research that will directly affect their everyday lives as just as necessary as the current focus on basic science.

We recommend that: research is informed by people with lived experience, in areas prioritised by community members; and that research findings are easy to access so that people can use research to assist real life decisions.

To download our report: 

Report

Courses 

Special Educational Needs and Disability (SEND): Developing Quality Inclusive Practice

We are pleased to announce University College London (UCL) has launched a short course on Williams Syndrome that is aimed at educational professionals about how to support students with WS in the classroom. More information and details can be found by clicking the below link:  
Course Information

Guidelines 

New Guidelines – Independence in Adulthood by Prof Emily Farran and Dr Ellen Ridley 

We would like to say a huge thank you to Professor Emily Farran and Dr Ellen Ridley who have created new guidelines for the WSF through research, on Supporting Adolescents & Adults with WS Take Steps Towards Independence. 
You can view and download these guidelines by clicking here: 
 
Independence in Adulthood