<div dir="ltr"><div class="gmail_default" style="font-family:comic sans ms,sans-serif;font-size:large">​I have Usher Syndrome and received the following call to action.</div><div class="gmail_default" style="font-family:comic sans ms,sans-serif;font-size:large">Could you please distribute this and hopefully everyone will help!</div><div class="gmail_default" style="font-family:comic sans ms,sans-serif;font-size:large">Thanks!</div><div class="gmail_default" style="font-family:comic sans ms,sans-serif;font-size:large">Linda</div><blockquote class="gmail_default" style="font-family:comic sans ms,sans-serif;font-size:large" type="cite"><div><b>From:</b> "Usher Syndrome Coalition" <<a href="mailto:k.vasi@usher-syndrome.org" target="_blank">k.vasi@usher-syndrome.org</a>><br><b>Subject:</b> <b>Call to Action: Ask Your Representative to Sign on to Support the Inclusion of Usher Syndrome Report Language</b><br><br></div></blockquote><blockquote class="gmail_default" style="font-family:comic sans ms,sans-serif;font-size:large" type="cite"><div><table width="100%" align="center" cellspacing="0" cellpadding="0"><tbody><tr><td align="center" style="padding:20px;border-collapse:collapse;background-color:rgb(93,93,93)"><table width="600" cellspacing="0" cellpadding="0"><tbody><tr><td align="left" valign="top" style="vertical-align:top;border-collapse:collapse;background-color:rgb(255,255,255)"><table width="100%" style="background-color:rgb(255,255,255)" cellspacing="0" cellpadding="0"><tbody><tr><td style="vertical-align:top;border-collapse:collapse"><table width="100%" cellspacing="0" cellpadding="0"><tbody><tr><td style="padding:0px;color:rgb(35,31,32);line-height:1.3em;font-family:Arial,Helvetica,Sans-Serif;font-size:14px;vertical-align:top;border-collapse:collapse"><p style="margin:0px;text-align:center"><a title="Coalition Homepage" style="color:rgb(48,86,212);font-family:Arial,Helvetica,Sans-Serif;font-size:16px;text-decoration:none" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/1240074/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=1653760&LinkId=1654784&Href=http%3A%2F%2Fwww.usher-syndrome.org%2F" target="_blank"><img width="700" alt="Usher Syndrome Logo Header" src="https://s3-us-west-2.amazonaws.com/bloomerang-public-cdn/ushersyndromecoalition/Newsletter-Header.png"></a></p></td></tr></tbody></table></td></tr><tr><td style="vertical-align:top;border-collapse:collapse"><table width="100%" cellspacing="0" cellpadding="0"><tbody><tr><td style="padding:20px 15px;color:rgb(35,31,32);line-height:1.3em;font-family:Arial,Helvetica,Sans-Serif;font-size:14px;vertical-align:top;border-collapse:collapse"><p style="margin:0px;color:rgb(35,31,32);line-height:1.1em;font-family:Arial,Helvetica,Sans-Serif;font-size:24px;font-weight:bold">URGENT: Ask Your Representative to Sign on to Support Inclusion of Usher Syndrome Report Language</p></td></tr></tbody></table></td></tr></tbody></table></td></tr><tr><td align="left" valign="top" style="vertical-align:top;border-collapse:collapse;background-color:rgb(255,255,255)"><table width="100%" cellspacing="0" cellpadding="0"><tbody><tr><td style="padding:10px 15px;vertical-align:top;border-collapse:collapse"><table width="100%" cellspacing="0" cellpadding="0"><tbody><tr><td style="padding:2px 10px;color:rgb(0,0,0);line-height:1.3em;font-family:Arial,Helvetica,Sans-Serif;font-size:16px;vertical-align:top;border-collapse:collapse;background-color:rgb(246,197,20)"></td></tr></tbody></table></td></tr><tr><td style="vertical-align:top;border-collapse:collapse"><table width="100%" cellspacing="0" cellpadding="0"><tbody><tr><td style="padding:15px;color:rgb(0,0,0);line-height:1.3em;font-family:Arial,Helvetica,Sans-Serif;font-size:16px;vertical-align:top;border-collapse:collapse"><p style="margin:0px 0px 10px;text-align:justify">The Usher Syndrome Coalition recently spent a <strong><a title="Link to Dreams and Realities blog post" style="color:rgb(48,86,212);font-family:Arial,Helvetica,Sans-Serif;font-size:16px;text-decoration:none" href="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" target="_blank">busy two days in Washington, DC</a></strong>.</p><p style="margin:0px 0px 10px;text-align:justify">Today, we ask you all to<strong> <a style="color:rgb(48,86,212);font-family:Arial,Helvetica,Sans-Serif;font-size:16px;text-decoration:none" href="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" target="_blank">reach out to your representatives</a></strong> to encourage them to sign on to a Dear Colleague letter supporting Usher syndrome report language.</p><p style="margin:0px 0px 10px;text-align:justify">Congresswoman Niki Tsongas is leading this letter to the House Committee on Appropriations, which is being circulated on Capitol Hill today, Monday, March 14th. </p><p style="margin:0px 0px 10px;text-align:justify"><strong>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 <span tabindex="0"><span>Monday, March 22nd</span></span>.</strong></p><p style="margin:0px 0px 10px;text-align:justify">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. </p><p style="margin:0px 0px 10px;text-align:justify"><strong><a title="Representative by zip code" style="color:rgb(48,86,212);font-family:Arial,Helvetica,Sans-Serif;font-size:16px;text-decoration:none" href="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" target="_blank">Click here to find your representative by zip code.</a></strong></p><p style="margin:0px 0px 10px;text-align:justify">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.<br> <br>Here's a sample message to work from:<br> <br><em>Dear Representative (Name):</em></p><p style="margin:0px 0px 10px;text-align:justify"><br><em>My name is <span style="color:rgb(0,0,0);background-color:rgb(255,204,0)">[NAME]</span> and I <span style="color:rgb(0,0,0);background-color:rgb(255,204,0)">[HAVE USHER SYNDROME/HAVE A FAMILY MEMBER OR FRIEND WITH USHER SYNDROME/AM A RESEARCHER WORKING ON USHER SYNDROME]</span>. 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.</em><br><em> </em><br><em>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 <span tabindex="0"><span>Tuesday, March 22, 2016</span></span>.</em></p><p style="margin:0px 0px 10px;text-align:justify"><em>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. </em></p><p style="margin:0px 0px 10px;text-align:justify"><em>Sincerely,</em></p><p style="margin:0px 0px 10px;text-align:justify"><span style="color:rgb(0,0,0);background-color:rgb(255,204,0)"><em>[Name]</em></span></p><p style="margin:0px;text-align:justify"><strong><a title="Email your House Representative Now" style="color:rgb(48,86,212);font-family:Arial,Helvetica,Sans-Serif;font-size:16px;text-decoration:none" href="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" target="_blank">Email your House Representative now.</a></strong></p></td></tr></tbody></table></td></tr><tr><td style="padding:10px 15px;vertical-align:top;border-collapse:collapse"><table width="100%" cellspacing="0" cellpadding="0"><tbody><tr><td style="padding:2px 10px;color:rgb(0,0,0);line-height:1.3em;font-family:Arial,Helvetica,Sans-Serif;font-size:16px;vertical-align:top;border-collapse:collapse;background-color:rgb(246,197,20)"></td></tr></tbody></table></td></tr><tr><td style="vertical-align:top;border-collapse:collapse"><table width="100%" cellspacing="0" cellpadding="0"><tbody><tr><td style="padding:15px;color:rgb(0,0,0);line-height:1.3em;font-family:Arial,Helvetica,Sans-Serif;font-size:16px;vertical-align:top;border-collapse:collapse"><p style="margin:0px 0px 10px"><strong><span style="font-size:26px">Questions?</span></strong></p><p style="margin:0px 0px 10px"><span style="font-family:Arial,Helvetica,sans-serif;font-size:16px">Contact us toll free at 1-855-998-7437 or email Krista Vasi at <strong><a style="color:rgb(48,86,212);font-family:Arial,Helvetica,Sans-Serif;font-size:16px;text-decoration:none" href="mailto:k.vasi@usher-syndrome.org" target="_blank">k.vasi@usher-syndrome.org</a></strong>.<br></span></p><p style="margin:0px"><span style="font-family:Arial,Helvetica,sans-serif;font-size:16px">Videophone (VP): 1-631-533-9621</span></p></td></tr></tbody></table></td></tr></tbody></table></td></tr><tr><td align="left" v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