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Usher Syndrome

Floor Speech

Date: Oct. 22, 2020
Location: Washington, DC


Mr. WYDEN. Mr. President, I would like to talk about a genetic condition called Usher syndrome. Usher syndrome is a rare genetic disease that affects at least 25,000 people in the United States. Usher syndrome causes deafness or hearing loss, as well as a retinal disease that progressively leads to blindness. Some children may be diagnosed at birth, while others are diagnosed at later stages of adolescence, affecting education, employment, and quality of life.

Usher type 1 individuals are born deaf and then learn, often before adolescence, that they are also losing their vision. Usher type 2 individuals are born with moderate to severe hearing loss and then in the prime of their adolescent lives are told that they are losing their vision. Usher type 3 are usually diagnosed during adolescence, leading to the slow loss of both hearing and vision.

At present, there are no treatments or cure for Usher syndrome, but that could change with awareness and support. Finding a cure has never been more urgent or more achievable. Promising research and positive clinical trials are occurring right now at universities, medical centers, and private laboratories across the country.

Even though there is currently no cure for Usher syndrome, I am proud that Oregonian researchers are leading the way searching for treatments and therapies. The Casey Eye Institute at Oregon Health & Science University--OHSU--is conducting the first human study of gene therapy for Usher syndrome, and researchers at the University of Oregon are generating animal models that represent the genotypes of the major Usher patient groups--both necessary steps towards the development of effective treatments. It is a privilege to serve a State that is home to such cutting-edge research into Usher syndrome.

To accelerate this research, the Usher Syndrome Coalition, including Emily Creasy from Oregon, is raising public awareness. Last month, on September 19, they helped recognize the 6th annual Usher Syndrome Awareness Day. The day fell near the autumnal equinox, which marks the start of days that contain more darkness than light, a powerful metaphor for the threat of Usher syndrome. I am proud to support the Usher syndrome community and am committed to doing what I can as Oregon's senior Senator to support researchers hard at work finding treatments and, hopefully, a cure. I am committed to working with my colleagues to raise awareness regarding this disease, and I applaud the hard work of the Usher Syndrome Coalition in making Usher syndrome research a priority at the National Institutes of Health.