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Advocate for Usher syndrome research funding

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.

Link to the Congressional Record Text

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