Sense Information and Advice Living with Usher A brief history of Usher syndrome Significant milestones 1860 Germany Albert von Graefe (known as the father of modern ophthalmology) and his assistant Richard Liebreich, detect pigmentary changes in the retinas of some deaf children. 1914 United Kingdom Charles Howard Usher, a Scottish ophthalmologist, conducts a study of deafness among people with visual problems. He recognised a link in 69 cases. His results were published in The Royal Journal of Ophthalmology. 1969 United States Dr McKay Vernon publishes a series of papers, which recognise the social and psychological needs of people with Usher. 1983 United Kingdom Mary Guest launches a national Usher Syndrome Awareness and Education Programme at Sense. 1985 The Netherlands The first Usher Syndrome Study Group takes place at St Michelsgestel, near Breda. From 1989 Researchers in the United States, United Kingdom and France find at least 11 different genes involved in Usher syndrome. The search continues. 1990s France Researchers, including Dominique Larget-Piet, Sylvie Gerber and Dominique Bonneau, publish papers on the genetics of Usher syndrome Type 1, based on studies of French families. 1995 Scientists from the United Kingdom and France studying one of the genes for Usher syndrome are able to locate its position on a chromosome. Finland Usher Type 3 is formally defined as a distinct type of Usher syndrome by Finnish scientists. From 1995 The exact genes and proteins involved in seven Usher subtypes are identified. 1998 United States Scientists, led by Dr Bill Kimberling, identify a second gene involved in Usher Type 2 (USH2A). By 1999 United Kingdom Two Usher self-help groups emerge – Usher UK, mainly for people with Type 1 Usher and HSI (Hearing and Sight Impaired) UK, mainly for Usher hearing aid users and other hearing aid users who have acquired deafblindness. 2000 A new Usher gene is identified by scientists from the United Kingdom and France. This gene is linked to Usher Type 1C. 2001 Three more Usher genes are identified. Two genes involved in Usher Type 1 are found by scientists in the USA, and the gene for Usher Type 3 is identified in Finland. 2003 United Kingdom The National Collaborative Usher Study (NCUS) is launched. The study is a collaboration between Sense and The Institute of Ophthalmology at Moorfields Eye Hospital and The Institute of Child Health at Great Ormond Street Hospital. The data collected continue to be analysed. Currently United States A programme for the early detection of Usher syndrome is being trialled among children who are identified as deaf at newborn hearing screening. Sources of help Sense Sense is a national charity that supports and campaigns for children and adults who are deafblind. We provide expert advice and information as well as specialist services to deafblind people, their families, carers and the professionals who work with them. Sense aims to help people with Usher to live as full a life as possible, and provides a range of services: * Information, advice and support to people with Usher and their families - particularly when the condition is first diagnosed. * Opportunities for people with Usher and their families to meet together - both face to face and online. * Training for education, health and social service professionals to understand Usher syndrome and its effects. Please contact the Information and Advice Team for further information: Tel: 0845 127 0066 Fax: 0845 127 0061 Text: 0845 127 0062 Email: info@sense.org.uk www.sense.org.uk Sense 101 Pentonville Road London N1 9LG Usher Life www.usherlife.co.uk This is an independent, dedicated, UK website for people who have Usher syndrome. The site includes details of forthcoming social events for people with Usher and their partners. Hearing and Sight Impaired Group (HSI) The Hearing and Sight Impaired Group brings people together to combat isolation and provide mutual support to its members. It holds regular meetings as well as social events. It also campaigns on local and national issues. For more information contact Sense. Counselling GPs may know of suitable counsellors working locally. The British Association for Counselling & Psychotherapy can provide a full list of accredited counsellors working in your region - see www.bacp.co.uk or phone 01455 883316 Any comments? This is one of a series of factsheets that provides information and advice for people with Usher and their families. They were put together with the help of people with Usher, their families and professionals experienced in this area. If you have any comments or suggestions about the content of this factsheet, , do please let us know.   Sense 2011