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<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Dear Linda,<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Thank you for reaching out to the National Federation of the Blind of Connecticut about your legislative issue. It is an honor that others in the community are recognizing
us as the strong advocacy machine that can impact the decisions made by our legislators. I got my master’s degree at Louisiana Tech University; as you probably know, the Cajun people have an extremely high rate of Usher’s syndrome.
<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">As you may be aware, we are knee-deep in a number of other initiatives at the moment, all of which are aligned with the purpose of our movement. While your initiative to better
fund research on Usher’s syndrome is a useful and valuable one, our movement focuses on the social and psychological aspects of disability rather than medical ones. For example, we work to educate the public about how it is not valiant or courageous to live
a normal life as a blind person. Every day, the National Federation of the Blind works to raise the expectations of blind people because low expectations create obstacles between blind people and our dreams. We know that, with the right training and opportunity,
we can live the lives we want; blindness itself is not what holds us back. <o:p>
</o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">I wish you luck in getting more funding for Usher’s syndrome research, and I am hopeful that you are able to educate the public about the normality and capacity of deaf-blind
people in the process.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Thanks, again!<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Justin Salisbury<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Arial",sans-serif">Justin M. Salisbury, MA, NOMC, NCUEB<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Arial",sans-serif">Legislative Coordinator<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Arial",sans-serif">National Federation of the Blind of Connecticut<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Arial",sans-serif">Email:
<a href="mailto:President@Alumni.ECU.edu"><span style="color:#0563C1">President@Alumni.ECU.edu</span></a><o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Arial",sans-serif">LinkedIn:
<a href="https://www.linkedin.com/profile/view?id=325734822"><span style="color:#0563C1">https://www.linkedin.com/profile/view?id=325734822</span></a><o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Arial",sans-serif">Twitter: @SalisburyJustin<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">"None can be free as long as any are enslaved"
<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">Dr. Kenneth Jernigan<o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"><o:p> </o:p></span></p>
<p class="MsoNormal"><b><span style="font-size:11.0pt;font-family:"Calibri",sans-serif">From:</span></b><span style="font-size:11.0pt;font-family:"Calibri",sans-serif"> Ct-nfb [mailto:ct-nfb-bounces@nfbnet.org]
<b>On Behalf Of </b>Linda O'Donnell via Ct-nfb<br>
<b>Sent:</b> Wednesday, March 16, 2016 10:31 AM<br>
<b>To:</b> Ct-nfb@nfbnet.org<br>
<b>Cc:</b> Linda O'Donnell <lmo082308@gmail.com><br>
<b>Subject:</b> [Ct-nfb] Call to Action - Usher Syndrome Coalition<o:p></o:p></span></p>
<p class="MsoNormal"><o:p> </o:p></p>
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<p class="MsoNormal"><span style="font-size:18.0pt"></span><span style="font-size:18.0pt;font-family:"Comic Sans MS"">I have Usher Syndrome and received the following call to action.<o:p></o:p></span></p>
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<p class="MsoNormal"><span style="font-size:18.0pt;font-family:"Comic Sans MS"">Could you please distribute this and hopefully everyone will help!<o:p></o:p></span></p>
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<p class="MsoNormal"><span style="font-size:18.0pt;font-family:"Comic Sans MS"">Thanks!<o:p></o:p></span></p>
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<p class="MsoNormal"><span style="font-size:18.0pt;font-family:"Comic Sans MS"">Linda<o:p></o:p></span></p>
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<p class="MsoNormal" style="margin-bottom:.25in"><b><span style="font-size:18.0pt;font-family:"Comic Sans MS"">From:</span></b><span style="font-size:18.0pt;font-family:"Comic Sans MS""> "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><o:p></o:p></span></p>
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<span style="font-size:10.5pt;font-family:"Arial",sans-serif;color:#231F20"><a 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" title="Coalition Homepage"><span style="font-size:12.0pt;color:#3056D4;text-decoration:none"><img border="0" width="700" style="width:7.2916in" id="_x0000_i1025" src="https://s3-us-west-2.amazonaws.com/bloomerang-public-cdn/ushersyndromecoalition/Newsletter-Header.png" alt="Usher Syndrome Logo Header"></span></a><o:p></o:p></span></p>
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<p style="margin:0in;margin-bottom:.0001pt;mso-line-height-alt:13.2pt"><b><span style="font-size:18.0pt;font-family:"Arial",sans-serif;color:#231F20">URGENT: Ask Your Representative to Sign on to Support Inclusion of Usher Syndrome Report Language<o:p></o:p></span></b></p>
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<p style="mso-margin-top-alt:0in;margin-right:0in;margin-bottom:7.5pt;margin-left:0in;text-align:justify;line-height:15.6pt">
<span style="font-family:"Arial",sans-serif;color:black">The Usher Syndrome Coalition recently spent a
<strong><span style="font-family:"Arial",sans-serif"><a 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" title="Link to Dreams and Realities blog post"><span style="color:#3056D4;text-decoration:none">busy
two days in Washington, DC</span></a></span></strong>.<o:p></o:p></span></p>
<p style="mso-margin-top-alt:0in;margin-right:0in;margin-bottom:7.5pt;margin-left:0in;text-align:justify;line-height:15.6pt">
<span style="font-family:"Arial",sans-serif;color:black">Today, we ask you all to<strong><span style="font-family:"Arial",sans-serif">
<a 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">
<span style="color:#3056D4;text-decoration:none">reach out to your representatives</span></a></span></strong> to encourage them to sign on to a Dear Colleague letter supporting Usher syndrome report language.<o:p></o:p></span></p>
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<span style="font-family:"Arial",sans-serif;color:black">Congresswoman Niki Tsongas is leading this letter to the House Committee on Appropriations, which is being circulated on Capitol Hill today, Monday, March 14th. <o:p></o:p></span></p>
<p style="mso-margin-top-alt:0in;margin-right:0in;margin-bottom:7.5pt;margin-left:0in;text-align:justify;line-height:15.6pt">
<strong><span style="font-family:"Arial",sans-serif;color:black">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.</span></strong><span style="font-family:"Arial",sans-serif;color:black"><o:p></o:p></span></p>
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<span style="font-family:"Arial",sans-serif;color:black">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. <o:p></o:p></span></p>
<p style="mso-margin-top-alt:0in;margin-right:0in;margin-bottom:7.5pt;margin-left:0in;text-align:justify;line-height:15.6pt">
<strong><span style="font-family:"Arial",sans-serif;color:black"><a 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" title="Representative by zip code"><span style="color:#3056D4;text-decoration:none">Click
here to find your representative by zip code.</span></a></span></strong><span style="font-family:"Arial",sans-serif;color:black"><o:p></o:p></span></p>
<p style="mso-margin-top-alt:0in;margin-right:0in;margin-bottom:7.5pt;margin-left:0in;text-align:justify;line-height:15.6pt">
<span style="font-family:"Arial",sans-serif;color:black">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><span style="font-family:"Arial",sans-serif">Dear Representative (Name):</span></em><o:p></o:p></span></p>
<p style="mso-margin-top-alt:0in;margin-right:0in;margin-bottom:7.5pt;margin-left:0in;text-align:justify;line-height:15.6pt">
<span style="font-family:"Arial",sans-serif;color:black"><br>
<em><span style="font-family:"Arial",sans-serif">My name is <span style="background:#FFCC00">
[NAME]</span> and I <span style="background:#FFCC00">[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.</span></em><br>
<em><span style="font-family:"Arial",sans-serif"> </span></em><br>
<em><span style="font-family:"Arial",sans-serif">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.</span></em><o:p></o:p></span></p>
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<em><span style="font-family:"Arial",sans-serif;color:black">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. </span></em><span style="font-family:"Arial",sans-serif;color:black"><o:p></o:p></span></p>
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<em><span style="font-family:"Arial",sans-serif;color:black">Sincerely,</span></em><span style="font-family:"Arial",sans-serif;color:black"><o:p></o:p></span></p>
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<em><span style="font-family:"Arial",sans-serif;color:black;background:#FFCC00">[Name]</span></em><span style="font-family:"Arial",sans-serif;color:black"><o:p></o:p></span></p>
<p style="margin:0in;margin-bottom:.0001pt;text-align:justify;line-height:15.6pt">
<strong><span style="font-family:"Arial",sans-serif;color:black"><a 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" title="Email your House Representative Now"><span style="color:#3056D4;text-decoration:none">Email
your House Representative now.</span></a></span></strong><span style="font-family:"Arial",sans-serif;color:black"><o:p></o:p></span></p>
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<strong><span style="font-size:19.5pt;font-family:"Arial",sans-serif;color:black">Questions?</span></strong><span style="font-family:"Arial",sans-serif;color:black"><o:p></o:p></span></p>
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<span style="font-family:"Arial",sans-serif;color:black">Contact us toll free at 1-855-998-7437 or email Krista Vasi at
<strong><span style="font-family:"Arial",sans-serif"><a href="mailto:k.vasi@usher-syndrome.org" target="_blank"><span style="color:#3056D4;text-decoration:none">k.vasi@usher-syndrome.org</span></a></span></strong>.<o:p></o:p></span></p>
<p style="margin:0in;margin-bottom:.0001pt;line-height:15.6pt"><span style="font-family:"Arial",sans-serif;color:black">Videophone (VP): 1-631-533-9621<o:p></o:p></span></p>
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<p class="MsoNormal" style="line-height:15.6pt"><strong><span style="font-size:10.5pt;font-family:"Arial",sans-serif;color:#231F20">Our Contact Information</span></strong><span style="font-size:10.5pt;font-family:"Arial",sans-serif;color:#231F20"><br>
Usher Syndrome Coalition <br>
2 Clock Tower Place, Suite 418<br>
Maynard, MA 01754<br>
1-978-637-2625<br>
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