[Congressional Record Volume 166, Number 161 (Thursday, September 17, 2020)]
[Extensions of Remarks]
[Page E856]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                RECOGNIZING USHER SYNDROME AWARENESS DAY

                                 ______
                                 

                         HON. JAMES P. McGOVERN

                            of massachusetts

                    in the house of representatives

                      Thursday, September 17, 2020

  Mr. McGOVERN. Madam Speaker, I rise today to recognize Usher syndrome 
and, in particular, to recognize the Usher Syndrome Coalition, a 
nonprofit organization based in Massachusetts that is building and 
connecting the global Usher syndrome community to help speed the search 
for a cure. This Saturday, September 19, 2020, is Usher Syndrome 
Awareness Day.
  Usher syndrome is a rare genetic disease that affects at least 25,000 
people in the United States. It causes deafness or hearing loss from 
birth, and retinal disease that slowly and progressively leads to 
blindness. Currently, there are no treatments or cure for Usher 
syndrome--but that can change with awareness and support. Finding a 
cure has never been more urgent or more achievable.
  Some of the world's most innovative researchers are leading efforts 
to develop treatments for Usher syndrome at institutions across the 
country including in my home state of Massachusetts. Scientists at 
Massachusetts Eye and Ear, Harvard Medical School and Boston Children's 
Hospital are pursuing promising paths to treatment, including a stem 
cell therapy trial and gene therapy strategies to treat the vision loss 
and hearing loss caused by Usher syndrome.
  As a nation, we need to do more to find a cure. Usher syndrome not 
only impacts our families but our communities, our health care system, 
our educational system, and our economy. For the past six years, 
federal spending on Usher syndrome has remained flat. This must change 
if there is to be any real progress toward finding a cure.
  Targeted research supported by sufficient funding and serious agency 
attention are critical components to finding a cure. The COVID-19 
pandemic and the daily challenges facing the Usher syndrome community 
could not be more pressing and finding a cure more paramount.
  I am proud to recognize the work of the Usher Syndrome Coalition, and 
the commitment to finding a cure for Usher syndrome. I stand with those 
who suffer from Usher syndrome and hope with the dedicated efforts of 
the Usher Syndrome Coalition, there will soon be a cure.

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