[Ct-nfb] Call to Action - Usher Syndrome Coalition

[Linda O'Donnell]

​I have Usher Syndrome and received the following call to action.
Could you please distribute this and hopefully everyone will help!
Thanks!
Linda

*From:* "Usher Syndrome Coalition" <k.vasi at usher-syndrome.org>
*Subject:* *Call to Action: Ask Your Representative to Sign on to Support
the Inclusion of Usher Syndrome Report Language*

[image: Usher Syndrome Logo Header]
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URGENT: 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
<https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/1240074/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=1653760&LinkId=1654785&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fdreams-and-realities.html>*
.

Today, we ask you all to* reach out to your representatives
<https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/1240074/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=1653760&LinkId=1654786&Href=http%3A%2F%2Fwww.house.gov%2Frepresentatives%2Ffind%2F>*
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
Monday, 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.
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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. *

*Sincerely,*

*[Name]*

*Email your House Representative now.
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*Questions?*

Contact us toll free at 1-855-998-7437 or email Krista Vasi at
*k.vasi at usher-syndrome.org
<k.vasi at usher-syndrome.org>*.

Videophone (VP): 1-631-533-9621

[image: USH Bug Footer]
*Our Contact Information*
Usher Syndrome Coalition
2 Clock Tower Place, Suite 418
Maynard, MA 01754
1-978-637-2625
http://usher-syndrome.org/
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