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What is Williams Syndrome? 

Williams Syndrome is a relatively rare neurodevelopmental condition caused by the sporadic deletion of approximately 25-28 genes on chromosome 7. Prevalence is reported to be approximately 1:20,000. The condition is associated with interesting aspects of cognition (e.g. a dissociation between relatively good language in comparison to poorer spatial skills), extraordinary facets of social behaviour (e.g. increased sociability but social vulnerability) and the presence of psychopathology (e.g. increased anxiety, sensory processing difficulties).

Across the various projects that we are running, we explore components of behaviour associated with children and adults who have Williams syndrome. 

Contacts for Williams Syndrome

Williams Syndrome Foundation

The WSF is on hand to offer help and support to families, carers and people with WS.

Join Our WS Facebook Group

Researchers exploring behaviour, cognition and everyday functioning of individuals with WS.
Williams Syndrome Facebook Group

Recruitment 

If you are interested in taking part in our work please contact Professor Debbie Riby.

We are currently recruiting individuals with Williams syndrome for a number of projects. Our general email for all WS research is neurodev@durham.ac.uk.

Supporting WS families at a time of uncertainty - Covid-19 

Professor Debbie Riby worked with the Williams Syndrome Foundation to produce flyers for families on 'Anxiety in Uncertain Times' as we are aware that anxiety levels at particularly high, and that for individuals with WS who are susceptible to heightened anxiety, who often prefer regular routines, and who may also have additional medical difficulties this is a particularly difficult time. This flyer has been distributed via social media and to all UK WS families via the WSF magazine for their members (April 2020 edition). The flyer has also been translated into several languages and distributed to families via support networks in these regions. You can find the English, French, Spanish, German, Dutch, Czech and Serbian versions of the flyer below. 

We advise that WS families follow the guidance of Public Health England and further information is also available on the WSF website

If you have any questions please email deborah.riby@durham.ac.uk.

Resources:

Czech Williams Syndrome Flyer
Dutch Williams Syndrome Flyer 
English Williams Syndrome Flyer
French Williams Syndrome Flyer  
German Williams Syndrome Flyer 
Serbian Williams Syndrome Flyer 
Spanish Williams Syndrome Flyer
 

Here are some other examples of the ways that we have been supporting families and seeking to make positive changes for those living with Williams Syndrome. 

Supporting WS families in Serbia

In October 2019 Professor Debbie Riby was invited to give a presentation to families from Serbia, Croatia, and Bosnia at a meeting of the Federation of Williams Syndrome (FEWS) charities in Novi Sad, just north of Belgrade. This was the very first meeting for WS families in Serbia following the launch of their new family support charity and it was fantastic to be invited to talk to everyone and to meet FEWS delegates from around Europe.

Debbie talked about anxiety in WS and current evidence of heightened anxiety in the literature. Families had some fantastic questions and discussions on recognising anxiety triggers, supporting anxiety needs and the everyday impact of anxiety.

Supporting WS families in Germany 

During 2019 we have been distributing our translated anxiety booklets throughout Germany with £6,000 funding from Durham University and the help of Bundesverband Williams Beuren Syndrome (BVWBS; German WS Association). 
We are thrilled with the response from families and teachers and so far we have received feedback from over 75 parents and over 25 professionals (e.g. including teachers). This project is led by Dr Mary Hanley.

Supporting Anxiety in Williams Syndrome 

In May 2018 our 'Williams Syndrome Anxiety booklets' were distributed to families in Japan, having been translated into Japanese by our collaborators Dr Masahiro Hirai and Dr Kosuke Asada. 

We are thrilled that our work may positively impact families in Japan (having also already been distributed throughout the UK, Ireland, France and to families in the US, Canada and Australia on demand). 

Supporting Families of Children with Williams Syndrome 

With funding from a variety of charities including the Williams Syndrome Foundation (WSF UK), the Williams Syndrome Association of Ireland and the French charity Autour des Williams, we have been able to raise awareness of the anxiety needs of children and adults with Williams Syndrome.

Based on information from parents, we developed and distributed booklets on anxiety in Williams syndrome for families to share with teachers in order to start a conversation about anxiety support. We further developed this into adult booklets for carers. This package of booklets has now been distributed to families throughout the UK, France, Ireland, and has been modified / translated for families in America and Japan. We have recently collected data on the positive impact that these booklets have created in raising awareness of the need for anxiety support. 

Since 2015 we have run a number of parent workshops on anxiety in Williams syndrome to help parents discuss anxiety identification and support techniques, we continue to run these events with support from the WSF throughout the UK.  

 

Get in Touch

Enquiries about the Centre for Neurodiversity & Development should be sent via the email below:

Centre for Neurodiversity & Development

Department of Psychology 
Science Site 
South Road 
Durham 
DH1 3LE 

Tel: +44 (0)191 334 3247