Category: Technology & Research

This text is taken from Usher Syndrome Coalition website, where you can find more information about genetics for Usher syndrome

Last weekend we kicked off a new NoisyVision project, thanks to Airbnb Social Impact Experiences. This is a new way to promote causes, build awareness, and raise funds. Social impact experiences give Airbnb guests a chance to learn more about our mission and cause — and have some fun along the way.

We are pleased to share with you the video, transcripts, slides and summaries of the 2018 International Symposium on Usher Syndrome in Mainz, Germany. More than 250 people from around the world attended the multi-day gathering in-person, and more than 150 joined the Patient Symposium via livestream, making it the single largest event ever held for the Usher syndrome community.

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.

NoisyVision has been promoting the #YellowTheWorld campaign for several years, to paint the world Yellow. We are sure that a more yellow world would be not only more visible to people with low vision, but also more beautiful, lively, joyful and positive.
However, as we often say, it is a matter of contrasts, of juxtaposition. The yellow would have no functional value if it were not opposed to other colors, which enhance the light.
Nadia transposes this chromatic approach to herself, to the way of reading the different aspects of the personality. In the autumn palette, yellow and blue contend for mood and time.

My name is Elisabetta and I have been practiving Yoga for many years under the guidance of several teachers. I started this practice after the meeting with the French Benedictine Father Jean Marie Déchanet, founder of Christian Yoga.

Elizabetta Vianello is a member of NoisyVision since just a few days but she seems to embody and live in a perfect way those who are our principles: to go beyond the limit, awareness and acceptance of limits. After telling us of her theatrical experience, she writes about the value of dance therapy, she is fortunate to practice with a teacher of the highest level, Elena Cerruto.

In 2015, the Usher Syndrome Coalition declared the third Saturday in September as our global “Usher Syndrome Awareness Day.” It was even entered into the Congressional Record!

It is a specialstory the one we share with you today. 
Dorothea Kohlhaas was gifted with the retinal implant Second Sight Argus II.
There might not be yet a Retinitis Pigmentosa treatment, but technology is moving forward. 
Here is the story that Dorothea wrote for NoisyVision.

Here is a collection of videos that explain how a person with low vision sees.