[Congressional Record Volume 166, Number 181 (Thursday, October 22, 2020)]
[Senate]
[Page S6399]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                             USHER SYNDROME

  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.

                          ____________________