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Friday, 25 September 2015 15:17

Usher Syndrome Awareness

Written by  Dominigue Sturz
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Usher Awareness Day Sept 19th 2015

Dominique Sturz, Usher Forum Austria

My name is Dominique and I am the mother of a 19 year old daughter with Usher Syndrome, she is a law student. My husband and I also have a 23 year old daughter, she is a medical student and not affected. We live in Austria and I am working on connecting Usher people and their families in Austria with each other and also with international Usher Groups. I used to represent CIA - Cochlea Implant Austria on an international level within Euro-CIU (European Union of Cochlear Implant Users) from 2005 to 2015, and before that time my daughter and I used to be CI Ambassadors. She happened to be the first Cochlear Implant User implanted bilaterally at an early stage worldwide and has always been serving as a positive role model. As a consequence early bilateral implantation has become standard in many European countries and worldwide.

So why not also be an Usher Ambassador?

I am raising awareness for Usher within the Austrian Deafblind and Hard of Hearing Groups by educating them (and also some professionals like ENTs, ophthalmologists, geneticists,..., not an easy job, even retinal specialists don’t know much about Usher Syndrome...). So I want to create an Austrian Usher Community and to connect it to the worldwide Usher Family and to international experts of Usher Syndrome.

Raising awareness for Usher Syndrome means to me first of all giving hope to people with Usher Syndrome and their families, to show them that they are not alone, that it is possible to lead a fruitful life with Usher Syndrome and that there are a lot of people around the world fighting against blindness, developing therapy options and finding a cure!

Raising awareness for Usher Syndrome also means getting involved an contributing to make the Usher Family grow and to educate the public and to make a cure possible!! Let’s own the Equinox!!

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