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March 2016: Ask Your Representative to Sign on to Support the Inclusion of Usher Syndrome Report Language

A picture of the Capitol Building and surrounding area with gold text on the bottom of the picture. Gold text reads: "Ask your representative to sign on to support Inclusion of Usher Syndrome Report Language."

The Usher Syndrome Coalition recently spent a busy two days in Washington, DC.

Today, we ask you all to reach out to your representatives to encourage them to sign on to a Dear Colleague letter supporting Usher syndrome report language.

Congresswoman Niki Tsongas is leading this letter to the House Committee on Appropriations, which is being circulated on Capitol Hill today, Monday, March 14th. 

This letter urges representatives to join the Congresswoman in supporting research regarding the treatment of Usher syndrome at the National Institutes of Health (NIH) by signing on to the letter by close of business Tuesday, March 22nd.

It's important that your representative hears from you within the next week. As evidenced by our past advocacy efforts, when you speak, they listen. 

Click here to find your representative by zip code.

Once you've located your representative, you'll be able to click through to a "Contact" page where you can send him or her your personalized message.

Here's a sample message to work from:

Dear Representative [Name]:
My name is [NAME] and I [HAVE USHER SYNDROME/HAVE A FAMILY MEMBER OR FRIEND WITH USHER SYNDROME/AM A RESEARCHER WORKING ON USHER SYNDROME]. Usher syndrome is the most common genetic cause of combined deafness and blindness. It impacts nearly 50,000 Americans. Those with Usher syndrome and their families demonstrate courage every day in overcoming the challenges they face.
I urge you to support research regarding the treatment of Usher syndrome at the National Institutes of Health (NIH) by signing the Dear Colleague letter to the House Committee on Appropriations in circulation today. Lead by Congresswoman Tsongas, this letter supports the inclusion of report language directing the NIH to prioritize Usher syndrome research at the National Eye Institute (NEI) and the National Institute on Deafness and Other Communication Disorders (NIDCD). The deadline to sign on is COB Tuesday, March 22, 2016.

We hope we can count on your support and we look forward to working together in order to eradicate this disease for current and future generations. 



Email your House Representative now. 


Contact us toll free at 1-855-998-7437 or email Krista Vasi at

Videophone (VP): 1-631-533-9621

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