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The Trust
Established in 2006, the Trust raises funds in memory of Ciaran, who suffered from a genetic skin disorder called Keratitis-Ichthyosis-Deafness Syndrome (“KID syndrome”), which not only affected his skin but also meant his sight and hearing were seriously impaired from 18 months old. Although the syndrome is very rare, Ciaran’s separate and debilitating problems of Visual Impairment, Chronic Deafness and a painful skin disorder are each worth individually supporting in charitable terms.
The Trust aims to help people with similar conditions, as well as supporting research and promoting awareness about the difficulties of living with the multiple disabilities of blindness, deafness and skin disorders. All this is to be done to honour the memory of Ciaran and his brave struggle through a life that was fulfilled and that he loved.
The Trustees
Janet Convery - Chairman to the Trust and head of schools and youth for ActionAid
Kita Buckley - Vice-chairman for the Trust
Sally Buckley - Secretary for the Trust
Sarah Wheeler - Finance Director for the Trust
John Sauven - Board member for the Trust and Executive Director for Greenpeace UK