Skip to main content

March 2015: 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."

Thursday, March 19, 2015 was a huge day for the Usher syndrome community.

Your letters, phone calls and visits leading up to the Congressional briefing on Usher syndrome made an incredible difference. Congress has definitely heard you.  

Today, we ask you all to reach out to your representatives again 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 the Hill today, Monday, March 23rd. 

This letter urges representatives to join the Congresswoman in supporting research regarding the prevention and treatment  of Usher syndrome at the National Institutes of Health (NIH) by signing on to the letter by close of business tomorrow, Tuesday, March 24th.

It's important that your representative hears from you within the next 24 hours. As evidenced by the briefing, 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 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 prevention and 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 prioritizing research into the causes and treatment options at NIH. The deadline to sign on is COB March 24, 2015.
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.
If you have any questions or need assistance, please do not hesitate to contact Krista Vasi at

Powered by Firespring