<html><head><meta http-equiv="content-type" content="text/html; charset=utf-8"></head><body dir="auto"><div><span></span></div><div><meta http-equiv="content-type" content="text/html; charset=utf-8"><div><br><br>Sent from my iPad</div><div><br>Begin forwarded message:<br><br></div><blockquote type="cite"><div><b>From:</b> "Usher Syndrome Coalition" <<a href="mailto:k.vasi@usher-syndrome.org">k.vasi@usher-syndrome.org</a>><br><b>Date:</b> August 3, 2015 at 11:28:28 AM CDT<br><b>To:</b> "Catherine Miller" <<a href="mailto:guillcat@gmail.com">guillcat@gmail.com</a>><br><b>Subject:</b> <b>Own the Equinox for Usher Syndrome Awareness Day</b><br><br></div></blockquote><blockquote type="cite"><div>
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<td class="background-main" style="background-color: #ffffff; vertical-align: top; border-collapse: collapse;" align="left" valign="top"><table class="email-design-region region-header" style="background-color: #ffffff" cellpadding="0" cellspacing="0" width="100%" id="region-header"><tbody><tr class="email-design-block-box designBlockBanner"><td class="email-design-block-margin designBlockBanner" style="vertical-align: top; border-collapse: collapse;"><table cellspacing="0" cellpadding="0" width="100%"><tbody><tr><td class="email-design-block designBlockBanner" style="color: #231f20; font-size: 14px; font-family: Arial, Helvetica, Sans-Serif; vertical-align: top; padding: 0px; line-height: 1.3em; border-collapse: collapse;" id="block-502796"><p style="text-align: center; margin: 0px 0px 0px 0px;"><img src="https://s3-us-west-2.amazonaws.com/bloomerang-public-cdn/ushersyndromecoalition/Newsletter-Header.png" alt="Usher Syndrome Logo Header" width="700"></p></td></tr></tbody></table></td></tr>
<tr class="email-design-block-box designBlockTitle"><td class="email-design-block-margin designBlockTitle" style="vertical-align: top; border-collapse: collapse;"><table cellspacing="0" cellpadding="0" width="100%"><tbody><tr><td class="email-design-block designBlockTitle" style="color: #231f20; font-size: 14px; font-family: Arial, Helvetica, Sans-Serif; vertical-align: top; padding: 20px 15px 20px 15px; line-height: 1.3em; border-collapse: collapse;" id="block-502794"><p style="color: #231f20; font-size: 24px; font-family: Arial, Helvetica, Sans-Serif; line-height: 1.1em; margin: 0 0 10px 0; font-weight: bold;"><span style="color: #003366;">HELP US OWN THE EQUINOX FOR USH AWARENESS</span></p> <p style="margin: 0px"><span style="color: #000000; font-size: 22px;"><strong>Usher Syndrome Awareness Day | Saturday, September 19</strong></span></p></td></tr></tbody></table></td></tr>
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<td class="background-main" style="background-color: #ffffff; vertical-align: top; border-collapse: collapse;" align="left" valign="top"><table class="email-design-region region-content" cellpadding="0" cellspacing="0" width="100%" id="region-content"><tbody><tr class="email-design-block-box designBlockArticleAccent"><td class="email-design-block-margin designBlockArticleAccent" style="vertical-align: top; border-collapse: collapse;"><table cellspacing="0" cellpadding="0" width="100%"><tbody><tr><td class="email-design-block designBlockArticleAccent" style="color: #000000; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif; vertical-align: top; padding: 15px; line-height: 1.3em; border-collapse: collapse;" id="block-502797"><p style="margin: 0 0 10px 0">We said we need an Usher syndrome Awareness Day and we got one! Thanks to the efforts of Senator Wyden and his staff, the third Saturday in September as "Usher Syndrome Awareness Day" was <strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513033&Href=https%3A%2F%2Fwww.congress.gov%2Fcongressional-record%2F2015%2F07%2F29%2Fsenate-section%2Farticle%2FS6128-2">entered into the Congressional Record</a></strong>. </p> <p style="margin: 0 0 10px 0">Now that we have the support of the United States Congress, we need to make the most of it.</p> <p style="margin: 0 0 10px 0">The autumnal equinox is the day when daylight and darkness hang in perfect balance, the moment before those in the northern hemisphere slip into darker days. It is a powerful metaphor for the threat of Usher syndrome and the state of Usher syndrome research. We have the power, today, to stop our world from sliding into darkness.</p> <p style="margin: 0px">We want to <strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513034&Href=https%3A%2F%2Fusher-syndromeorg.presencehost.net%2Fequinox%2Fown-the-equinox.html%23register">Own the Equinox</a></strong>, claiming the third Saturday in September each year as <strong>Usher Syndrome Awareness Day</strong>. This global event will start on one side of the world (we're looking at you, Australia) and run around the globe to the farthest point before the International Date Line (that’s your cue, Alaska).</p></td></tr></tbody></table></td></tr>
<tr class="email-design-block-box designBlockImage"><td class="email-design-block-margin designBlockImage" style="vertical-align: top; border-collapse: collapse;"><table cellspacing="0" cellpadding="0" width="100%"><tbody><tr><td class="email-design-block designBlockImage" style="color: #000000; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif; vertical-align: top; padding: 15px; line-height: 1.3em; border-collapse: collapse;" id="block-519210"><p style="text-align: center; margin: 0px 0px 0px 0px;"><img style="vertical-align: middle" src="https://s3-us-west-2.amazonaws.com/bloomerang-public-cdn/ushersyndromecoalition/USHEQX.png" alt="Usher Syndrome Awareness Day, September 19, 2015" width="484" height="252" hspace="10"></p></td></tr></tbody></table></td></tr>
<tr class="email-design-block-box designBlockSeparator"><td class="email-design-block-margin designBlockSeparator" style="vertical-align: top; padding: 10px 15px; border-collapse: collapse;"><table cellspacing="0" cellpadding="0" width="100%"><tbody><tr><td class="email-design-block designBlockSeparator" style="background-color: #f6c514; color: #000000; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif; vertical-align: top; padding: 2px 10px; line-height: 1.3em; border-collapse: collapse;" id="block-502799"></td></tr></tbody></table></td></tr>
<tr class="email-design-block-box designBlockArticleAccent"><td class="email-design-block-margin designBlockArticleAccent" style="vertical-align: top; border-collapse: collapse;"><table cellspacing="0" cellpadding="0" width="100%"><tbody><tr><td class="email-design-block designBlockArticleAccent" style="color: #000000; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif; vertical-align: top; padding: 15px; line-height: 1.3em; border-collapse: collapse;" id="block-519209"><p style="color: #323e66; font-size: 22px; font-family: Arial, Helvetica, Sans-Serif; line-height: 1.1em; margin: 0 0 10px 0; font-weight: bold;">HOW YOU CAN COMMIT TO OWNING THE EQUINOX</p> <p style="margin: 0 0 10px 0"><strong>Bucket 1: Just a mile a day!<br></strong></p> <p style="margin: 0 0 10px 0"><em>Run or walk the Own the Equinox Mile-a-thon in your hometown.</em></p> <p style="margin: 0 0 10px 0">While a marathon is 26.2 miles run in succession, you can run or walk the mile-a-thon over 26 days. <strong>Starting August 25th</strong>, pop outside your house or hop on the treadmill at the gym, and walk or run at least one mile every day. You will have covered at least 25 miles in the 25 days leading up to Usher Syndrome Awareness Day on September 19th, when you join the USH family for a brisk 1.2 miles! Kids can do it, too!</p> <p style="margin: 0 0 10px 0"><strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" title="Sign up for the Own the Equinox Mile-a-thon" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513034&Href=https%3A%2F%2Fusher-syndromeorg.presencehost.net%2Fequinox%2Fown-the-equinox.html%23register">Sign up here</a></strong>.</p> <p style="margin: 0 0 10px 0"><strong>Bucket 2: Can you go the distance?</strong></p> <p style="margin: 0 0 10px 0"><em>Run the official Equinox Marathon in Fairbanks, Alaska.</em></p> <p style="margin: 0 0 10px 0">Up for an even bigger challenge? On September 19th, <strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513035&Href=http%3A%2F%2Fbit.ly%2Fusheqxmarathon">run the official Equinox Marathon</a></strong> in Fairbanks, Alaska with Mark Dunning, Caroline Brown, and others.</p> <p style="margin: 0 0 10px 0"><strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" title="Sign up for the Equinox Marathon" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513034&Href=https%3A%2F%2Fusher-syndromeorg.presencehost.net%2Fequinox%2Fown-the-equinox.html%23register">Sign up here</a></strong>.</p> <p style="margin: 0 0 10px 0"><strong>Bucket 3: Create your own 'a-thon'</strong></p> <p style="margin: 0 0 10px 0"><em>Not a runner? Not a problem.</em></p> <p style="margin: 0 0 10px 0">Start your own spin-a-thon, yoga-thon, bake-a-thon...Starting August 25th, share what you're doing to Own the Equinox for the next 25 days. Then join us in spirit for the big day on September 19th.</p> <p style="margin: 0px"><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" title="Sign up to Own the Equinox" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513034&Href=https%3A%2F%2Fusher-syndromeorg.presencehost.net%2Fequinox%2Fown-the-equinox.html%23register"><strong>Sign up here</strong></a>.</p></td></tr></tbody></table></td></tr>
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<tr class="email-design-block-box designBlockArticleAccent"><td class="email-design-block-margin designBlockArticleAccent" style="vertical-align: top; border-collapse: collapse;"><table cellspacing="0" cellpadding="0" width="100%"><tbody><tr><td class="email-design-block designBlockArticleAccent" style="color: #000000; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif; vertical-align: top; padding: 15px; line-height: 1.3em; border-collapse: collapse;" id="block-519211"><p style="color: #323e66; font-size: 22px; font-family: Arial, Helvetica, Sans-Serif; line-height: 1.1em; margin: 0 0 10px 0; font-weight: bold;">RECENT USHER SYNDROME BLOG POSTS</p> <p style="margin: 0 0 10px 0"><strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" title="Blog link" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513036&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fown-the-equinox-dont-let-the-sun-go-down-on-ush.html">Own the Equinox: Don't Let the Sun Go Down on USH</a> </strong>| <em>August 3, 2015</em> by Mark Dunning</p> <p style="margin: 0 0 10px 0">We need to cure the most common cause of combined deafness and blindness. And we can do it. On September 19th, Usher Syndrome Awareness Day, let’s demonstrate our power to make the impossible possible. <strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513036&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fown-the-equinox-dont-let-the-sun-go-down-on-ush.html">Read more...</a></strong></p> <p style="margin: 0 0 10px 0"><strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513037&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fown-the-equinox-usher-syndrome-awareness-day.html">Own the Equinox: Usher Syndrome Awareness Day</a> </strong>| July 20, 2015 by Mark Dunning</p> <p style="margin: 0 0 10px 0">On September 19th, we want to Own the Equinox. We need a global Usher Syndrome Awareness Day and we're going to have one. <strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513037&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fown-the-equinox-usher-syndrome-awareness-day.html">Read more...</a></strong></p> <p style="margin: 0 0 10px 0"><strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513038&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fgene-editing-primer-the-how-the-if-and-the-when.html">Gene Editing Primer: The 'How', the 'If' and the 'When'</a> </strong>| July 16, 2015 by Jennifer Phillips, PhD</p> <p style="margin: 0 0 10px 0">What is CRISPR/Cas and why is everyone so excited about it? <strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513038&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fblog%2Fgene-editing-primer-the-how-the-if-and-the-when.html">Read more...</a></strong></p> <p style="margin: 0px"><strong><a style="text-decoration: none; color: #f6c514; font-size: 16px; font-family: Arial, Helvetica, Sans-Serif;" href="https://crm.bloomerang.co/Mailing/Email/RecipientPortal/Click/454708/?OrganizationId=e46de892-d8a3-11e4-bba1-0ad83c6949df&MailingId=512001&LinkId=513039&Href=http%3A%2F%2Fwww.usher-syndrome.org%2Four-story%2Fush-blog.html">CLICK HERE TO READ OLDER USH BLOG POSTS</a></strong></p></td></tr></tbody></table></td></tr>
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