A number of our projects are highly impactful and working with families, charities and schools is crucial to ensuring that we maximise the impact of our work.
Here are some examples of the ways that we have been supporting families and making an impact...
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 traggers, 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) ... more to follow shortly
This project is led by Dr Mary Hanley
Williams Syndrome National Convention
We are pleased to have been asked to give a talk at the national families convention organised by the Williams Syndrome Foundation in May 2018 so that we can disseminate information on our research / impactful work support anxiety needs in individuals with Williams Syndrome. We will be focusing on our anxiety work and the recent CBT-based anxiety intervention that we ran for the first time with families with our collaborator Dr Jacqui Rodgers at Newcastle University
Supporting Anxiety in Williams Syndrome
In May 2018 our 'Williams Syndrome Ainxety 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).
Expanding our support for families (2017 and beyond)
As part of our impact work supporting WS families in the UK we are pleased by be launching a new project working with Sector Leaders from the tourism and retail sectors. We know that some aspects of WS impact upon the ability of families to engage with everyday activites or opportunities - such as going for a day out, or going shopping. We are working with these sectors to produce new guidelines / support packages for families of individuals with WS, and for people working within these sectors. More news to follow shortly.....
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.