Breaking Down Barriers Update – December 2021

Our Year 2 Breaking Down Barriers (BDB) project continues to make good progress:

Video clips of your experiences

We are continuing to invite members of our WS community (WS affected, parent and/or sibling carers) to record a short video to share their experiences and top tips on 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 WS and how our community makes the most from life.

To date, 6 members (4 WS affected and 2 parent carers) have recorded their videos and others have already agreed to take part.

To our participants, thank you being part of this project. Your positivity is inspiring! Thank you also for your patience as we edit your videos.

Final video clips will be sent back to each person for their approval, before being shared on the WSUK website. Videos will not be made available on the website until we have received approval from several participants.

If you’d like to record a video, please contact Tracy – admin@wolframsyndrome.co.uk for more information or respond to one of our invitations.

About recording your video

Please bear in mind that you can choose the topic(s) 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 need to be word perfect! Finally, your approval for each video clip is required before being 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.