Communicating Usher Syndrome: NoisyVision and vEyes meet the Scuola Holden


It’s Monday, the first Monday of November. The monumental entrance of the Scuola Holden welcomes us majestically under the light rain that accompanies the reawakening of the city of Turin, after a weekend full of cultural and musical initiatives. The building Headquartered earlier the Royal Powder Factory and Nitri Refinery and then the Cavalli Barracks, since 2013 it houses the storytelling school founded in 1994 by the writer Alessandro Baricco.
Warehouses and workshops have left space for small classrooms with colored walls, which overlook the three courtyards of the complex. There are no desks, but each room has a single oval table around which teachers and students sit. Our classroom has yellow walls. Not even on purpose, the color of #YellowTheWorld welcomes the project that will bring together students of the College Brand New, dedicated to business communication, with NoisyVision ONLUS and vEyes.
The first stage of this initiative is a presentation on the Usher Syndrome, a genetic disease that determines the coexistence of retinitis pigmentosa, deafness and, sometimes, problems of balance.

We break the ice by inviting the students to wear glasses that simulate the different visual impariemets caused by Retinitis Pigmentosa and we ask them to perform simple actions such as writing a message with the smartphone, catching an object on the fly and moving in space.

The students react curiously and experiment what will then be presented to them on a clinical level by Dr. Giacomo Calzetti, an optometrist research fellow at the University of Parma.

Giacomo had a one-year post-doc experience at the Scheie Eye Institute in Philadelphia and under the supervision of Prof. Samuel G. Jacobson, one of the world’s leading experts in the Usher Syndrome. He currently works at the Ospedale Maggiore of Parma and proposes to create the first research center in Italy specialized in this pathology.

After illustrating the different types of Usher Syndrome and its dissemination, Dr. Calzetti describes the symptoms and clinical features of retinitis pigmentosa. It also stresses the importance of early diagnosis and mentions the state of the search for cures that stop or at least slow down retinal degeneration.

Then it is time to listen to the testimonies of Dario Sorgato and myself, respectively President and Secretary of NoisyVision ONLUS. Each of us tells the path to acceptance and evolution of the disease. A common element of our life experiences is the extremely difficult moment of diagnosis, experienced without adequate information and support from the professionals involved. We therefore present the activities of our NGO, which, among the many purposes, aims to stimulate in people with visual and / or auditory disability a proactive attitude towards their condition so that, through appropriate strategies, they can follow their passions despite the limits . We therefore indicate the various initiatives of the #YellowTheWorld campaign, which aims to raise awareness on the issues of accessibility and mobility of visually impaired people.

Without a glimmer of hope however, it is necessary to have the right tools, such as, for example, technological aids. As a demonstration of this and of the need to create an extensive network that integrates different skills and approaches. Last but not least, Massimiliano Salfi, President of vEyes, connects via Skype from vEyes Land. Massimiliano reports the exceptional results obtained with vEyes wear, able to support a person with visual impairment in the performance of daily acttivties, Poseidon 2.0, useful to the blind swimmer to receive indications on the end of the race or the possible loss of course, and finally , Leonard, who had his test bench with the exceptional vEyes orchestra, composed of elements with and without visual impariments which debuted last July at the Amphitheater of Milo.
It is time to come to a conclusion, despite the attention of the students is still high. They showed curiosity, empathy and even emotion. Dario and I took the floor again and described to them the communication project on Usher Syndrome in which we would like to involve them. We agreed a second meeting to check the first developments.

… We will keep you posted!

L. C.

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