In a video, Anna Khutoryan requests help to find a cure for the leading cause of deaf-blindness among those who are Jewish. Learn about Usher Syndrome Type 1F and what you can do to help. More info at usher1f.org/
Video: www.youtube.com/watch?v=r_HnD1TaEts
Usher Syndrome 1F
They are looking for people anywhere in the world who are Deaf-Blind, Jewish, and have a diagnosis of Usher Syndrome. If you were born deaf and your ancestors came from central or eastern Europe, including Russia, Poland and/or Ukraine, and you have Usher Syndrome , then you are an Ashkenazi Jew and likely have Usher 1F.
Usher 1F Collaborative is a nonprofit charitable foundation founded in 2013 to raise funds for medical research to find a cure for Usher 1F. If you’d like to support this cause to help restore vision to people with Usher 1F, please visit usher1f.org.
Once you have a confirmed diagnosis, you should add your name and Usher 1F diagnosis to the Usher Syndrome Registry so that researchers can have enough patients to begin a clinic trial. All information shared with the registry at www.usher-registry.org is confidential.
