Seminar on Usher Syndrome

The Roberto Wirth Fund held the seminar “Introduction to Usher Syndrome” on November 30th, 2007, organized in collaboration with Gallaudet University and the State School for the Deaf in Rome. The initiative was proposed to introduce a rare genetic condition, Usher Syndrome in which 3-6% of deaf people gradually begin to lose their sight during the course of their life.

Prof. Steven D. Collins from Gallaudet University, and Patrizia Ceccarani, Educational Director of Rehabilitation at Lega del Filo d'Oro, illustrated the effects of deafblindness on the social life of the people who are affected. In particular, Prof. Steven D. Collins interviewed Amerigo Iannola, suffering from Usher syndrome in adulthood and who has been a member of the Committee of deafblind people at Lega del Filo d'Oro for many years. The interview highlighted the difficulties of deaf-blind people interacting with the surrounding world and ways to address them.

Patrizia Ceccarani presented a survey that was carried out during the European project "CAUSE," the way of life for people with Usher syndrome. From 2001 to 2003, the CAUSE project involved a number of European organizations whose main objective was to promote European-Wide awareness and knowledge of Usher and Charge Syndrome. According to research, a system of aids, the access to practical and professional support and the motivation are the fundamental  issues people with Usher syndrome are faced with and until they can maintain their daily independence, they will continue to be confronted with many difficult challenges.

In closing, RWf presented the book "Introduction to Usher Syndrome”, written by James Edge and Akiko Matsumoto.The book was printed also in Braille, with the help of Lions Club “Circolo Accademia” of Rome. Thanks to their generous contribution, RWF was able to distribute the book free of charge at the end of the seminar.