Charity or Patient Organisation Including Pro Bono

Usher Syndrome is a rare genetic condition that causes varying degrees of hearing and sight loss in young adults and children. Awareness of this condition is low, with 40% of people misdiagnosed, leading to families suffering from uncertainty and lack of time to prepare for an unavoidable new reality.

Since Usher Syndrome is currently incurable, how could we raise more awareness about this severe condition without spreading fear?

Society is obsessed with technology; it grabs the headlines and the imagination of the public. So to get the public’s attention and raise awareness of the condition, we got in touch with Cambridge Design Partnership, a tech innovation company. By combining science and technology, we aimed to pave the way for innovation and simultaneously raise awareness for Ushers Syndrome.

Through months of research, we discovered how touch could help to bridge the gap between someone with hearing loss and vision impairments and someone without. Together, we developed The Touchable memory, a device that turned an audio memory into a tactile experience, by transforming stimuli such as sound or music, into tactile, haptic sensations.

To launch the idea, we created a film, that captured the emotional outcome of a real person living with Usher Syndrome—Laura and her sister, Hannah, interacting with “The Touchable Memory” where they experience a moment in time in the same way, despite Laura’s hearing and sight limitations.

The film started a conversation across social media, with people sharing their personal Usher stories. Across the UK, people were watching, sharing, and supporting others. Brand awareness was through the roof, with the Cure Usher Syndrome website seeing a 15,000% increase in visits.

The message for everybody was loud and clear. Usher syndrome is incurable until we find a cure.

Judges Comments

Judges loved the concept behind this campaign and video—an imaginative idea that really brought into focus the particular way in which Usher syndrome affects individuals. Together, the charity and agency have utilised a societal interest in technology (to the point of working with a tech innovation company!) to be extremely inventive and therefore also resonate with their message. The idea of connecting people via touch was great and the emotion was powerful, particularly with the use of music and portrayal of a sibling relationship. This became evident in the outcomes generated, such as the whopping numbers of extra visits for the Cure Usher Syndrome website and sharing of personal stories via social media.

Warmhearted and memorable, judges liked that this is all conveyed in a story that does not need to over-explain; a few lines of copy alongside the visual and audio get across everything that needs to be said. The film was very clever in that it did not focus on the negative—the setup of “not creating fear” being a key goal—instead providing an engaging, original and very affectionate way of raising awareness.

Sally Elms, Creative Planet / ALK Positive Lung Cancer

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