Breaking Down Barriers Update – August 2021

Our Year 2 Breaking Down Barriers (BDB) project has made good progress during the summer:

1) New BDB webpage

The new BDB webpage is now available (link to the new page: Wolfram Syndrome UK). This new page provides updates and information from our project and broader work, which currently includes:

– links to helpful organisations for BAME communities

– short intro videos in English, Urdu and Arabic

– link to the dual language leaflet (English / Urdu) – Understanding WS

2) Video clips of your experiences

We are currently inviting our WSUK members to record a video to share their experiences and top tips on different aspects of living with WS, which will be shared as short clips on the WSUK website. The aim is to help others understand what it is like to live with the condition.

To date, 4 members of our community (3 WS affected and 1 parent carer) have recorded their videos and several others have already agreed to take part. Thank you to each of you for being part of this project and agreeing to share your experiences. Your positivity and how you have each adapted your life to achieve your goals is truly inspiring!

Videos are currently being edited and the final versions will be sent back to each person for their approval, before being shared on the WSUK website. Videos will not be shared on the website until we have received final approval from several members of the WS community.

If you’d like to be involved, please contact Tracy ( for more information or respond to one of our invitations to participate.

Please bear in mind that you can choose the topics that you would like to talk about. You don’t need to appear on camera if you would prefer not to, you can simply speak instead. Any mistakes / hesitations will be removed during editing, so you don’t have to be word perfect! Finally, your approval for each video clip is required before it is shared on the WSUK website.

“Breaking Down Barriers” is part of an initiative for patient organisations being run by Alstrom UK and funded by the Sylvia Adams Charitable Trust.