tag:blogger.com,1999:blog-49793361898165545722024-03-13T01:27:48.695-07:00Kate Foundation for Rett Syndrome ResearchThe Kate Foundation for Rett Syndrome Research is a 501(c)(3) nonprofit organization dedicated to raising research funding and awareness of Rett Syndrome and other MECP2-related disorders.Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.comBlogger46125tag:blogger.com,1999:blog-4979336189816554572.post-46716723236224370752013-11-18T17:22:00.000-08:002013-11-18T17:22:31.564-08:002013 Kate Foundation Ornaments!<span class="fbPhotosPhotoCaption" data-ft="{"type":45,"tn":"*G"}" id="fbPhotoSnowliftCaption" tabindex="0"><span class="hasCaption">We're
excited to announce the 2013 Kate Foundation Glass Ornament Collection!
The ornaments are now available for purchase on our website and will begin shipping out on November 25! Thank you!<br /> <br /> <a href="http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.katefoundation.org%2Fbuy_2013_ornaments.html&h=6AQGq2rIw&enc=AZPcYdeQ9IBGZEKuRVu-ozkCC1o87Ku1FrWtIl2_S4fr77jvhmVYW8_a_XEKp2r0hlM1dtFSeYzl7t-zoIg9pOVNlBwaGiAUy8PBxJftAGHaUHp-30xi0djHGOVmP8UFqCFpg8KvpgUKjPgAWYSVxbW5&s=1" rel="nofollow nofollow" target="_blank"><span>http://</span><wbr></wbr><span class="word_break"></span><span>www.katefoundation.org/</span><wbr></wbr><span class="word_break"></span>buy_2013_ornaments.html</a></span></span><br />
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Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-69098282838670277652013-03-29T10:54:00.000-07:002013-03-29T10:54:13.990-07:00Sound, Sound Everywhere<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYf-iNpMTCCSQeCedO0RbsPKb4_JXznvjTRIjlFVG4SYuP6fI7dDuOH7YhK45C86YPrPwZgSHVVqHGdYE8penRtZp_9xHwp3a1lTql-sraf6dlnzrWPdmhwoTXclSsBO86-utfoYScNBw/s1600/2013_esionix_headphones.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="121" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYf-iNpMTCCSQeCedO0RbsPKb4_JXznvjTRIjlFVG4SYuP6fI7dDuOH7YhK45C86YPrPwZgSHVVqHGdYE8penRtZp_9xHwp3a1lTql-sraf6dlnzrWPdmhwoTXclSsBO86-utfoYScNBw/s320/2013_esionix_headphones.jpg" width="320" /></a></div>
Kate was off from school today, so we went down to one of our favorite breakfast places for pancakes. They often have jazz music playing two notches too loud on their ceiling speakers. If you have the misfortune of sitting directly beneath one of the speakers, it’s three notches too loud. Kate can have trouble being in spaces where there’s too much going on, particularly louder spaces. Her breathing deteriorates and her motor skills fall apart. The staff at the cafe has gotten to know us and they’ll turn it down (a little) when we ask them. However, it’s really made us notice a larger trend – that many public places have become artificially loud. “Can you stop the whining and go find another breakfast place?” isn’t an unreasonable question to ask. But what we’re finding is a growing number of everyday public spaces we go to inject some level of floating music or TV noise into the background: department stores, grocery stores, restaurants. During routine car maintenance last week, our car dealership had a gory re-run of ‘Criminal Minds’ on the TV in their waiting room. At 9:30 in the morning. So a humble plea to all business owners everywhere – a little softer please, if possible. Just two notches maybe. Or three.
Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-27972007972918896412013-03-23T20:20:00.001-07:002013-03-23T20:25:49.094-07:00"I Was Raised to Treat Others How You'd Want to be Treated"<embed src="http://cnettv.cnet.com/av/video/cbsnews/atlantis2/cbsnews_player_embed.swf" scale="noscale" salign="lt" type="application/x-shockwave-flash" background="#333333" width="425" height="279" allowFullScreen="true" allowScriptAccess="always" FlashVars="si=254&&contentValue=50141588&shareUrl=http://www.cbsnews.com/8301-18563_162-57575920/act-of-sportsmanship-gives-texas-high-schooler-shot-at-glory/" />Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-37261345761882871312013-03-20T17:04:00.001-07:002013-03-21T16:43:25.148-07:00Goodbye WinterEventually our driveway was unearthed.<span style="mso-spacerun: yes;"> </span>But not before the shovel broke in half.<span style="mso-spacerun: yes;"> </span>Goodbye Winter 2012-2013.<br />
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Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-83394508399102554032013-02-14T21:08:00.003-08:002013-03-26T17:00:00.069-07:00Activating the X<iframe src="http://player.vimeo.com/video/59237649?autoplay=0" width="398" height="224" frameborder="0" webkitAllowFullScreen mozallowfullscreen allowFullScreen></iframe>
<span class="userContent"><br /></span>
<br />
<span class="userContent">Angelman syndrome is a neurological disorder
that shares multiple symptoms with Rett syndrome including motor
dysfunction, seizures, and communication impairment. In 1997,
researchers identified the faulty gene that causes Angelman syndrom<span class="text_exposed_show">e,
called UBE3A. All children inherit a UBE3A gene from their mother and
their father, however, the father’s UBE3A gene is naturally silenced.
Angelman syndrome occurs when the working UBE3A gene inherited from the
mother is mutated or deleted, leaving no gene to produce the needed
UBE3A protein.<br /> <br /> In 2011, Ben Philpot, Ph.D. of the University of
North Carolina, Chapel Hill (UNC) and his colleagues discovered a drug
that can turn “on” the silenced paternal copy of the UBE3A gene in mice.
Using a class of drugs called topoisomerase inhibitors, the
researchers were able to activate the silenced gene in the neurons of
mice. Activating a silenced gene with a drug/compound had never been
accomplished before and is considered a breakthrough in neurological
research science.<br /> <br /> Inspired by the success of this work and its
potential application to Rett syndrome science, the Rett Syndrome
Research Trust (RSRT) has made a $2.2 million commitment to Dr.
Philpot’s UNC team to apply the same drug discovery methodology used in
the Angelman screens to find a drug or drugs capable of activating the
healthy, dormant MECP2 gene in Rett syndrome. Your generous purchases
and donations to the Kate Foundation have contributed directly to the
funding of this work. Thank you again.</span></span><br />
Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-11557259355403643792012-11-29T10:23:00.000-08:002012-11-29T10:23:13.108-08:00Table Full of Rett Citron<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLQMkAc8i9PiQqVBIvxl-idSyx-PX1o1fAdYMzkLSxIDBsz6E7JBI_fan5ObueRrq9WSJaETaIxTKO-5FG3trni0YvZedKo18BzPIBXYd0hVB_GyhDbIBXyEStsSxnyDKy_IBwQqtX6hY/s1600/2012_kate_citron_table.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLQMkAc8i9PiQqVBIvxl-idSyx-PX1o1fAdYMzkLSxIDBsz6E7JBI_fan5ObueRrq9WSJaETaIxTKO-5FG3trni0YvZedKo18BzPIBXYd0hVB_GyhDbIBXyEStsSxnyDKy_IBwQqtX6hY/s400/2012_kate_citron_table.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Rett Citron before they're packed in individual boxes.</span></td></tr>
</tbody></table>
<br />Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-60418085708871417272012-11-17T22:40:00.001-08:002012-11-17T22:40:53.278-08:002012 Ornaments Released!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4CDg-lTveb9orNmpWQd9ZIYPNpUloDFX7AnGUsl2AlgXJpq4IH3YmqOCCH0CLAulabFmurIwlJ7t7ycJ_JNvOsezm4oHOPNLB2-SaWCw_0UuaViBxIT6K2eneJZIq869kxBmlUGUncd0/s1600/2012_600x600_4quad.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4CDg-lTveb9orNmpWQd9ZIYPNpUloDFX7AnGUsl2AlgXJpq4IH3YmqOCCH0CLAulabFmurIwlJ7t7ycJ_JNvOsezm4oHOPNLB2-SaWCw_0UuaViBxIT6K2eneJZIq869kxBmlUGUncd0/s400/2012_600x600_4quad.jpg" width="400" /></a></div>
<span class="userContent">We appreciate so many people being
so supportive of the new ornaments and our campaign. The Kate Foundation website is now
updated and active to receive new orders for the 2012 ornaments. Thank
you again!</span><br />
<br />
<span class="userContent">The link is here: <a href="http://www.katefoundation.org/buy_2012_ornaments.html">http://www.katefoundation.org/buy_2012_ornaments.html</a></span><br />
Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-28856691614029371142012-11-17T22:34:00.001-08:002012-11-17T22:34:59.588-08:00Rett Lily Pond<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiWwFOpUCx7f3VVS8zi0DMHgZs2CBZGT4DkR64fjX17kHhcoHJA9iFkgRdrAedymfRTFpXSgMzq44IrR04dy4lFF6WeXFj81PU_1A9_M0GJQKQr8_8ivoJXcnwCm0kWAoQ5iTlNQFQTbc/s1600/2012_lilypond_square.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiWwFOpUCx7f3VVS8zi0DMHgZs2CBZGT4DkR64fjX17kHhcoHJA9iFkgRdrAedymfRTFpXSgMzq44IrR04dy4lFF6WeXFj81PU_1A9_M0GJQKQr8_8ivoJXcnwCm0kWAoQ5iTlNQFQTbc/s400/2012_lilypond_square.jpg" width="350" /></a></div>
2012 Kate Foundation Ornament<br />
Introducing: Rett Lily PondKate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-92108463383463168532012-11-16T07:38:00.000-08:002012-11-16T07:38:05.643-08:00Rett Fairy Dust<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS99LcrvsIXvC72nyoalWkUpDjzAYA_WlVxObZP4ZRzGEPYz74yYUaNUqgb4cqQwRuOADKEGMTS3rkzhaWGVFtqv0DxkKG-6YAFfPihVrtRRGsuyq1IRmcT8jnKRt6BAX_hZWUTxMFJyA/s1600/2012_fairydust_square.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS99LcrvsIXvC72nyoalWkUpDjzAYA_WlVxObZP4ZRzGEPYz74yYUaNUqgb4cqQwRuOADKEGMTS3rkzhaWGVFtqv0DxkKG-6YAFfPihVrtRRGsuyq1IRmcT8jnKRt6BAX_hZWUTxMFJyA/s400/2012_fairydust_square.jpg" width="350" /></a></div>
2012 Kate Foundation Ornament<br />
Introducing: Rett Fairy DustKate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-51741241938328371102012-11-15T09:28:00.000-08:002012-11-15T09:38:44.722-08:00Rett Citron<div class="separator" style="clear: both; text-align: center;">
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<br />
2012 Kate Foundation Ornament<br />
Introducing: Rett CitronKate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-19245484397759784392012-11-14T07:27:00.001-08:002012-11-14T07:27:30.724-08:00Rett Marrakesh<div class="separator" style="clear: both; text-align: center;">
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2012 Kate Foundation Ornament<br />
Introducing: Rett MarrakeshKate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-45226216851205412982012-11-14T07:24:00.000-08:002012-11-14T07:24:56.566-08:00Here We Go<!--[if gte mso 9]><xml>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQaxDQOJk3P_jvoxXgV23VJvrVTCOMxSHoZnevD73_3fZFvASnFyoutSe_VQl4chm6ODI5Yj0gk8KTJ0ELV2FuziuWr0qZsByDVtTfru2nXzY5XDOdnvMdAJoZWuFUfyfCTHIrUc0JnqM/s1600/2012_kate_sandy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="253" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQaxDQOJk3P_jvoxXgV23VJvrVTCOMxSHoZnevD73_3fZFvASnFyoutSe_VQl4chm6ODI5Yj0gk8KTJ0ELV2FuziuWr0qZsByDVtTfru2nXzY5XDOdnvMdAJoZWuFUfyfCTHIrUc0JnqM/s320/2012_kate_sandy.jpg" width="320" /></a></div>
<div class="MsoNoSpacing">
We had it all planned out.<span style="mso-spacerun: yes;"> </span>This year, we’d order inventory early.<span style="mso-spacerun: yes;"> </span>This year, all of the planets would align and
ornament ordering, distribution and fulfillment would be seamlessly
orchestrated with a savvy 2012 marketing effort.<span style="mso-spacerun: yes;"> </span>The wondrous hum of ornament packages moving
along the conveyor belt and out to eager supporters would fill the air.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
Then we got hit by a hurricane.<span style="mso-spacerun: yes;"> </span>Again.<span style="mso-spacerun: yes;">
</span>Shortly before our 2011 Gala, we’d been hit by Hurricane Irene.<span style="mso-spacerun: yes;"> </span>No power, no cell phones and lots of peanut
butter and jelly sandwiches.<span style="mso-spacerun: yes;"> </span>During this
year’s storm, we spent some quality time at a Holiday Inn and were displaced a
few additional days from our house to resolve some damage to our property.<span style="mso-spacerun: yes;"> </span>Just as contractors were about to start working
on our house, we were delayed again by about a foot of snow.<span style="mso-spacerun: yes;"> </span>It’s become the Land of the Lost Three Weeks.<span style="mso-spacerun: yes;"> </span>Look, a Sleestack.</div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
We’re not complaining (too much), but a hurricane will put
a wrench in your glass ornament plans every time.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>So
here we are, almost fully recovered, ready and rearing to go with the new
ornament introductions.</div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
We’ll introduce each of the four new ornaments over the
next four days, one a day, and by this weekend the website interface will be
active and ready to receive orders for the 2012 ornaments.<span style="mso-spacerun: yes;"> </span>We will begin shipping the new ornament orders
beginning Nov. 26, 2012.</div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
Thanks to everyone who has been asking about the new
designs and we appreciate all of your support of the Kate Foundation and Rett
syndrome research.</div>
<br /><span class="userContent"></span>Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-20682346531632526202012-11-09T11:12:00.000-08:002012-11-09T11:12:47.678-08:00RSRT NYC<!--[if gte mso 9]><xml>
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<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD2G5q7HiUTxzsedRYdoBlu1nDFvVdXvyCEa6Kr-PqoS37G-gv_9uYgBFWbJDO2Z5PcB2pR4FJOjEtbArg29Rsl0a1Fxj1bgC5g3NOfJEs3FySzezm7Y8Og9h68BV4S3PdwSxLOzUt2lQ/s1600/2012_kate_nycevent.jpg" imageanchor="1"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD2G5q7HiUTxzsedRYdoBlu1nDFvVdXvyCEa6Kr-PqoS37G-gv_9uYgBFWbJDO2Z5PcB2pR4FJOjEtbArg29Rsl0a1Fxj1bgC5g3NOfJEs3FySzezm7Y8Og9h68BV4S3PdwSxLOzUt2lQ/s320/2012_kate_nycevent.jpg" width="320" /></a></div>
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<br /></div>
<div class="MsoNoSpacing">
Congratulations to Rachel and Jason Rothschild and so many
other tri-state area Rett families for spearheading the Rett Syndrome Research
Trust NYC event last night.<span style="mso-spacerun: yes;"> </span>Despite the
last few challenging weeks of hurricanes, snowstorms and power loss in the region,
hundreds of people attended.<span style="mso-spacerun: yes;"> </span>It was held
at a magnificent venue, the Broad Street Ballroom in the heart of Manhattan’s
Wall Street district.<span style="mso-spacerun: yes;"> </span>Our friend Stefanie
Gutierrez, mother of four-year-old Anna who passed away in September from
complications due to Rett syndrome, gave a brave and beautiful speech about Anna
and the importance of reversing Rett syndrome.<span style="mso-spacerun: yes;">
</span>It was a great night and congratulations again to RSRT and all the families
and volunteers who organized it.</div>
Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-88496981461383546152012-11-06T13:50:00.000-08:002012-11-06T13:50:03.535-08:00Vote for the Donut<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpFvV2SCNuA0_9d1E1xwW7v-k0T3Lo4-LaxMsrSwwgfMnRpBs_4BvC2jpbCVy73kNI7eiQ4NQwgLqSrpSzDDSe9rmqSRNhyphenhyphenj1BbHUJUEJOT9QmdKDcY5l5__Q2clJa7bKUnytLokK9dGo/s1600/2012_kate_vote.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpFvV2SCNuA0_9d1E1xwW7v-k0T3Lo4-LaxMsrSwwgfMnRpBs_4BvC2jpbCVy73kNI7eiQ4NQwgLqSrpSzDDSe9rmqSRNhyphenhyphenj1BbHUJUEJOT9QmdKDcY5l5__Q2clJa7bKUnytLokK9dGo/s320/2012_kate_vote.jpg" width="320" /></a></div>
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Kate came with me early this morning to the polling place
and was all smiles.<span style="mso-spacerun: yes;"> </span>We went to the bakery
afterward and she cast her own enthusiastic vote for a honey-glazed donut.<span style="mso-spacerun: yes;"> </span>The term limit for that poor donut was about 90
seconds.</div>
Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-52615020299795826902012-09-21T14:41:00.001-07:002012-09-21T14:41:30.324-07:00Thank You!<!--[if gte mso 9]><xml>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs_rdg50J8DuMO_zbQHzg6yEdlvejAn14adwfCMZExcX0_dsaSHbvpIepzDNN23_qyLREX0lObIPwksHcUT0mS2qJNVm5NgpZxbQPQKz850FeuWkCB89_g9OqcMieXCYvSHAPFedCh1eA/s1600/2012_kate_swing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhs_rdg50J8DuMO_zbQHzg6yEdlvejAn14adwfCMZExcX0_dsaSHbvpIepzDNN23_qyLREX0lObIPwksHcUT0mS2qJNVm5NgpZxbQPQKz850FeuWkCB89_g9OqcMieXCYvSHAPFedCh1eA/s320/2012_kate_swing.jpg" width="240" /></a></div>
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<br /></div>
<div class="MsoNoSpacing">
As Kate got taller and heavier last year, we realized in
slow motion that she was about to graduate out of the standard infant bucket swing
at our local park.<span style="mso-spacerun: yes;"> </span>It was great while it
lasted, but there is no doubt we pushed the swing’s limits.<span style="mso-spacerun: yes;"> </span>In the end, if you could manage to lift her
into the swing by yourself, the surprise waiting at the end of your swing
session was that she was a whole lot tougher to extricate because her legs and
braces would get caught in the bucket.<span style="mso-spacerun: yes;"> </span>The
extent to which strangers will prefer to stare and marvel versus actually offering
to lend a hand is a bit of a stunner.</div>
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<br /></div>
<div class="MsoNoSpacing">
Nevertheless, our favorite town park didn’t have any
special needs or handicapped accessible swings, so we moved on and surveyed the
dozen or so other parks our town offers and they didn’t have any either.</div>
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<br /></div>
<div class="MsoNoSpacing">
So we stewed for a couple of weeks.<span style="mso-spacerun: yes;"> </span>We estimated there to be more than 50
individual swings in town and Kate wasn’t able to use any of them.<span style="mso-spacerun: yes;"> </span>The concept of raging at Town Hall and provoking
the local special needs attorney to start a legal light-saber battle with the
town seemed cinematically romantic for all of 3 seconds.<span style="mso-spacerun: yes;"> </span>Instead, Sarah wrote a great letter to the
head of the Town Commission in charge of Our Favorite Oceanside Park.<span style="mso-spacerun: yes;"> </span>In a nutshell, they responded in less than a
week with this:<span style="mso-spacerun: yes;"> </span>“You’re right.<span style="mso-spacerun: yes;"> </span>We don’t have any special needs swings in
town and we’d like to be pro-active about getting one.<span style="mso-spacerun: yes;"> </span>Are there any swings you would
recommend?<span style="mso-spacerun: yes;"> </span>Oh, and by the way, we just talked
to the town Rotary Club and they’ve offered to pay for the swing and the
installation.”<span style="mso-spacerun: yes;"> </span>Right then, a double
rainbow descended the sky and a unicorn walked through it.</div>
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<br /></div>
<div class="MsoNoSpacing">
Forgive the sarcasm, but in the world of special needs
advocacy, no one ever says “yes” off the cuff, trust us.<span style="mso-spacerun: yes;"> </span>It’s usually, “No.<span style="mso-spacerun: yes;"> </span>Absolutely not.<span style="mso-spacerun: yes;"> </span>Well, maybe.<span style="mso-spacerun: yes;">
</span>Come get it,” and then you get the opportunity to walk on hot coals.</div>
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<br /></div>
<div class="MsoNoSpacing">
So a huge THANK YOU to the Branford Rotary Club and our town’s
Memorial Park Commission for sparing us the hot coals and, more importantly,
for providing Kate and so many other special needs kids (and teenagers) a swing
to call their own.<span style="mso-spacerun: yes;"> </span>They even placed it strategically
under a beautiful tree in the shade.<span style="mso-spacerun: yes;">
</span>Thanks again!</div>
Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-64686497868570131462012-09-07T07:51:00.000-07:002012-09-07T07:51:18.758-07:00Clean and Simple<!--[if gte mso 9]><xml>
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If, by chance, you have a Facebook account and you’re willing, you can do something good for Rett syndrome
research today with your account profile.</div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
The Rett Syndrome Research Trust (RSRT) has been
nominated to the Chase Community Giving Campaign which gives out grants to worthy
organizations that receive the most votes through Facebook.</div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
We typically don’t like to encourage these kind of voting
campaigns, but this one is clean, simple and could mean $250,000 for research.<span style="mso-spacerun: yes;"> </span>You can only vote once and it doesn’t require
you to come back.<span style="mso-spacerun: yes;"> </span>They don’t ask for
your email address or require you to set up any kind of account.<span style="mso-spacerun: yes;"> </span>You only need to have a Facebook account and
the desire to hit the “VOTE” button.</div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
Following the link below will take you to the RSRT voting
page.<span style="mso-spacerun: yes;"> </span>Sharing the link below with others
also counts as an extra vote if friends click through and vote for RSRT.<span style="mso-spacerun: yes;"> </span>Thanks again!</div>
<div class="MsoNoSpacing">
<br /></div>
<div class="MsoNoSpacing">
<a href="http://apps.facebook.com/chasecommunitygiving/charity/view/ein/26-0687439?ref=f42cf56423">http://apps.facebook.com/chasecommunitygiving/charity/view/ein/26-0687439?ref=f42cf56423</a></div>
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</div>
<div class="MsoNoSpacing">
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Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-45773485136692371792012-09-04T07:13:00.000-07:002012-09-04T07:13:09.573-07:00Summer Wanes<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVwbuVDKzRQS2S2X8-HSv33d1ZfPMmfxRPI4l6Lv5ItOGFiDY0eoXWCfLyu0BsdYRILAbrM0gA8fdSaylbUBCjrj7Iz8Ky55AxQuS7CXCS6WyPygUhQh5Os90ad5CS0ZRhbeQWFoLcDFE/s1600/2012_beach_sc.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVwbuVDKzRQS2S2X8-HSv33d1ZfPMmfxRPI4l6Lv5ItOGFiDY0eoXWCfLyu0BsdYRILAbrM0gA8fdSaylbUBCjrj7Iz8Ky55AxQuS7CXCS6WyPygUhQh5Os90ad5CS0ZRhbeQWFoLcDFE/s320/2012_beach_sc.jpg" width="320" /></a></div>
<br />
<span class="userContent">Summer officially hangs on until September 22, 2012. Until then we'll pretend it's not already getting colder.</span>Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-33949582607008357042012-07-19T15:40:00.000-07:002012-07-19T15:40:08.744-07:00Growing Up<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXV9VcTtITt0d5P6v0zsdRqMVOrQ3lOaGHqgJa7qmm0_b-zHwud-Z0CLJvsk8via-Hl6QadZqrzE0SYJLs3qQNw13-SX-mtkrffX_ysuaXmKv4PUf4ophJ-41Slcs4w8cLohE9_KsAt7Y/s1600/2012_kate_horse.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="140" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXV9VcTtITt0d5P6v0zsdRqMVOrQ3lOaGHqgJa7qmm0_b-zHwud-Z0CLJvsk8via-Hl6QadZqrzE0SYJLs3qQNw13-SX-mtkrffX_ysuaXmKv4PUf4ophJ-41Slcs4w8cLohE9_KsAt7Y/s400/2012_kate_horse.jpg" width="400" /></a></div>
<br />Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-85235254454623305402012-07-16T13:33:00.001-07:002012-07-16T13:33:52.966-07:00I Don't Know What You Want Me To Do<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjqXyUW8NhxVVnf0o1XeNNBzR0ir8QeYbMBJ5gNw9TrMnQd2pi5EVSSjZwc-Qv2WkIFP6h7noe6tXq4lI865p4A_k8Yokj2LoZ8j2KTSqepiJ5xuKQFBxnStFGwiyhtfICdEsDyR8rT7Y/s1600/2012_plane_sc.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjqXyUW8NhxVVnf0o1XeNNBzR0ir8QeYbMBJ5gNw9TrMnQd2pi5EVSSjZwc-Qv2WkIFP6h7noe6tXq4lI865p4A_k8Yokj2LoZ8j2KTSqepiJ5xuKQFBxnStFGwiyhtfICdEsDyR8rT7Y/s320/2012_plane_sc.jpg" width="320" /></a></div>
<br />
<i>Note to self for future flights: if online attempts to acquire seat assignments fail, call the airline ahead of time.</i><br /> <br /> SIGHING GATE AGENT: There’s nothing I can do for you, sir, we’re about to board the plane.<br /> <br /> ME: There’s three of us - <span class="text_exposed_show">my wife, myself and my daughter - and my daughter’s only five. She can’t sit by herself.<br /> <br /> SIGHING GATE AGENT: We’re already late boarding.<br /> <br />
ME: I booked the tickets online four months ago and your reservation
system wouldn’t allow me to choose any seats. Three hours ago, when we
got to the airport in Charleston for our first flight leg, I tried to
get our assigned seats there, but they told me they couldn’t assign us
seats for this leg from there. They said we needed to do it here in
Charlotte.<br /> <br /> SIGHING GATE AGENT: They were right.<br /> <br /> ME:
Right. Okay. Our flight just got in. We hustled across the airport
and we have three separate seats not near each other, which isn’t going
to work.<br /> <br /> SIGHING GATE AGENT: Well, I don’t know what you want me to do.<br /> <br /> ME: My daughter is five. We don’t all need to be together, but she needs to be next to my wife or myself.<br /> <br /> SIGHING GATE AGENT: All I have for you is an empty exit row.<br /> <br /> ME: Exit row?! Great! My five-year-old can sit in an exit row?<br /> <br /> SIGHING GATE AGENT: No.<br /> <br /> ME: Wow. Okay. Any other suggestions?<br /> <br />
SIGHING GATE AGENT: Well, you’re just going to need to get on the
plane and ask a few people to switch around seats when you get in there.<br /> <br />
ME: We need to dismantle two metallic plates from our daughter’s
wheelchair before we gate-check it and we need to carry her on the plane
because she has trouble walking on. That will make it tough to
coordinate a new seating plan once we get on with her because our three
seats are all over the plane.<br /> <br /> SIGHING GATE AGENT: This plane’s going to be late and they’re going to blame me.<br /> <br /> ME: Can you offer the exit row seats you just offered me to someone sitting next to any of our three seats?<br /> <br /> SIGHING GATE AGENT: That’s going to take time.<br /> <br /> ME: It is.<br /> <br />
SIGHING GATE AGENT ON INTERCOM: Will the passenger traveling in Seat
6C please come to the podium? Will the passenger traveling in Seat 6C
please come to the podium?<br /> <br /> PASSENGER: I’m in 6C.<br /> <br /> SIGHING GATE AGENT: Would you be willing to switch your seat for an exit row seat for this gentlemen?<br /> <br /> PASSENGER: Only if it’s a window.<br /> <br /> SIGHING GATE AGENT: It’s a window. Actually, it’s a whole row.<br /> <br /> PASSENGER: Great.<br /> <br /> ME: Great.<br /> <br /> SIGHING GATE AGENT: [Sigh.]</span>Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-71687216505929904932012-06-15T07:41:00.000-07:002012-06-15T07:41:27.517-07:00Pirate Day<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiPzdV8mfo4uO8TUBmPLwj-Nb-solqTtKeU2eM6Umd6j_FFGIgfdculUUWz3PBFXDo3EZgzFVIzgQu0MT4IMcNvxcFMq9wTUFo4lkZzFQHG2Lk3zEAkR8q4MGupC5K8l-8xqiNBZPF1Jw/s1600/2012+kate_pirate.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiPzdV8mfo4uO8TUBmPLwj-Nb-solqTtKeU2eM6Umd6j_FFGIgfdculUUWz3PBFXDo3EZgzFVIzgQu0MT4IMcNvxcFMq9wTUFo4lkZzFQHG2Lk3zEAkR8q4MGupC5K8l-8xqiNBZPF1Jw/s320/2012+kate_pirate.jpg" width="320" /></a></td></tr>
<tr style="font-family: Times,"Times New Roman",serif;"><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><i><span style="font-family: Georgia,"Times New Roman",serif; font-size: small;">You didn't know this, but that cupcake you've got there is actually mine.</span></i></span></td></tr>
</tbody></table>
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<div class="MsoNormal">
Today was Pirate Day at school.<span style="mso-spacerun: yes;"> </span>In between physical therapy and lunch, Kate
will be plundering other unsuspecting classrooms, probably of their
cupcakes.<span style="mso-spacerun: yes;"> </span>Appropriately, some pirate-like
words were uttered in the house this morning as I tried to get her bandana to
stay on.<span style="mso-spacerun: yes;"> </span></div>Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-57798364240774354082012-05-15T10:02:00.000-07:002012-05-15T10:02:38.204-07:00Unexpected Travels<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaj_CyU9yne-EiLbXfHJrYtXe_CnIlqkcxF1QI2KtUZy-5k6CbZFLL5KIhG_Ncv6TuhpupWnTkndW_i2AD9WRS60rpJkxDcjrmZ0enZzVD7Uo6jGj8HOSo51WrPPBja4suTP9p9shuFKQ/s1600/kate_green.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaj_CyU9yne-EiLbXfHJrYtXe_CnIlqkcxF1QI2KtUZy-5k6CbZFLL5KIhG_Ncv6TuhpupWnTkndW_i2AD9WRS60rpJkxDcjrmZ0enZzVD7Uo6jGj8HOSo51WrPPBja4suTP9p9shuFKQ/s320/kate_green.jpg" width="320" /></a></div>
<br />
On Friday afternoon, Kate came home from school teetering at the edge of sleepiness. School can make her tired. A ride in the car can help expedite the napping process, so we headed out. We ended up circling the town green of the next town over, Guilford. If ever there was a textbook New England Town Green, here ye shall find it. Churches with steeples, general store, hardware store and big shading oak trees.<br />
<br />
Twenty minutes in the car and her sleepiness morphed into wide-eyed wakefulness, so we got out of the car at the Green. Sky blue, strong breeze. And Kate wanted to walk. She’s been very tentative lately walking on her own -- she likes to be near enough to something to hold onto if she falls. But stand outside with her, put out your hand out and she often wants to go. And we did. All the way across the Guilford Green.<br />
<br />
It took a very long time and we took a lot of breaks. Between breath-holds and Kate just wanting to look around, we stopped. A lot. About a quarter of the way across, I said, “Kate, I think we should go all the way to the other side.” Her face can be very expressive, but she didn’t react much. She didn’t protest either, which she knows how to do. On we went. People scattered about the green resting in the tree shade took notice. On the occasions we are stared at in public, it’s usually for all the wrong reasons.
But not today. A five-year-old little girl to whom walking is clearly an effort, taking 6-8 steps at a time, resting a couple of minutes between surges, cracking tiny smiles in between. She made it all the way across the long end of the Green, legs buckling a little by the end. <br />
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhp5SWiOlf6KfOBuisfMjU6zSO0GjL8o1171XQWTIufRSI9qwaKYRj3C7xwLYD_fXjWVkg8VRI9v1Wj1W2zcZzaDYwgCruYBNdbFz6x5Sr-eGxWq0oH03GZitOmoerYzMvsf2rvJdhCGc/s1600/guilford_green_color.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhp5SWiOlf6KfOBuisfMjU6zSO0GjL8o1171XQWTIufRSI9qwaKYRj3C7xwLYD_fXjWVkg8VRI9v1Wj1W2zcZzaDYwgCruYBNdbFz6x5Sr-eGxWq0oH03GZitOmoerYzMvsf2rvJdhCGc/s320/guilford_green_color.jpg" width="249" /></a></div>Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-81724667931912240472012-04-16T14:35:00.000-07:002012-04-16T14:35:22.333-07:00Plus or Minus<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdQULZtb1dSHKqdgG3jJvCrRzrgLIiO5xm0XY-UIgtFqb8UTr1JNygCbsCpnQn4wi2Ddq2OANGGp56IABWxM9NckvqdKKjp5r-8yUWsefe-CzSpzUBwaT5IaxfoFFrPDSkWy8zks9JeJ0/s1600/2012+kate_easter.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="201" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdQULZtb1dSHKqdgG3jJvCrRzrgLIiO5xm0XY-UIgtFqb8UTr1JNygCbsCpnQn4wi2Ddq2OANGGp56IABWxM9NckvqdKKjp5r-8yUWsefe-CzSpzUBwaT5IaxfoFFrPDSkWy8zks9JeJ0/s320/2012+kate_easter.jpg" /></a></div><br />
<br />
Easter Sunday was a horrible Rett syndrome day and it trickled into some surrounding days. Kate hadn’t slept well that Saturday night and she seemed overwhelmed by the activity surrounding our Easter plans. Her breathing was poor, she barely ate anything and she spent much of the day being upset.<br />
<br />
She’s been better this week. Her school has since sent home this snapshot, taken the week before Easter, showing her at ease and enjoying Egg Hunt festivities at school.<br />
<br />
Celebrating holidays and important events on their actual calendar days can have an elusive success rate with Rett syndrome. Plus or minus a few days, we’ve learned, really opens up the possibilities. The picture was not taken on Easter, but it was taken on Kate’s Easter.Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-88903603537801045522012-03-27T15:18:00.002-07:002012-03-27T15:18:44.384-07:00Kipnis Lab Interview<iframe allowfullscreen="" frameborder="0" height="225" mozallowfullscreen="" src="http://player.vimeo.com/video/38672552?title=0&byline=0&portrait=0" webkitallowfullscreen="" width="400"></iframe><br />
<a href="http://vimeo.com/38672552">Kipnis Lab Interview</a> from <a href="http://vimeo.com/rettsyndrome">RSRT</a> on <a href="http://vimeo.com/">Vimeo</a>.Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-48640459703549899852012-03-27T15:17:00.000-07:002012-03-27T15:17:18.583-07:003D Computer Animation of Kipnis Nature Paper<iframe allowfullscreen="" frameborder="0" height="225" mozallowfullscreen="" src="http://player.vimeo.com/video/38697609?title=0&byline=0&portrait=0" webkitallowfullscreen="" width="400"></iframe><br />
<a href="http://vimeo.com/38697609">Animation of Kipnis Nature paper</a> from <a href="http://vimeo.com/rettsyndrome">RSRT</a> on <a href="http://vimeo.com/">Vimeo</a>.Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0tag:blogger.com,1999:blog-4979336189816554572.post-2453053316238826112012-03-27T15:12:00.003-07:002012-03-27T15:21:37.234-07:00Your Money at Work<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirP63T3xzHlUBTSRaN2qDsuWsLRIORC7NkiZVQ5FDoUKc93o9AVBL1ffxIQZmsdpTg4cUwhCgdPC2niHyeE-qsa1u-jMN_XU7VG4dXjNLJMBhMzZ8EiiCOP9dCccZaNAamSvQVqsiwR_k/s1600/engulf+01_7251.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirP63T3xzHlUBTSRaN2qDsuWsLRIORC7NkiZVQ5FDoUKc93o9AVBL1ffxIQZmsdpTg4cUwhCgdPC2niHyeE-qsa1u-jMN_XU7VG4dXjNLJMBhMzZ8EiiCOP9dCccZaNAamSvQVqsiwR_k/s400/engulf+01_7251.jpg" width="400" /></a></div><div class="MsoNoSpacing"><br />
</div><div class="MsoNoSpacing"><br />
</div><div class="MsoNoSpacing">Dear Friend of the Kate Foundation:</div><div class="MsoNoSpacing"><br />
</div><div class="MsoNoSpacing">This week, Jonathan Kipnis, Ph.D. and colleagues at the University of Virginia published a paper in <i>Nature</i>, a premier peer-reviewed science journal, demonstrating that severe symptoms of Rett syndrome in mice were arrested when faulty immune cells in the brain—called microglia—were replaced with healthy cells via bone marrow transplant.</div><div class="MsoNoSpacing"><br />
</div><div class="MsoNoSpacing">Your generous donations to the Kate Foundation helped fund this research through our relationship with the <a href="http://www.rsrt.org">Rett Syndrome Research Trust (RSRT)</a>. Your contributions have made a direct impact on the science and have opened a potential new avenue for understanding Rett syndrome and developing possible treatments. This is your money at work!</div><div class="MsoNoSpacing"><br />
</div><div class="MsoNoSpacing">Bone marrow transplantation is a serious medical procedure, and the prospect of applying the mouse model results to humans is being approached with appropriate caution. Further testing, replication of the results, and additional investigation is required to explore the possibilities. Potential drug-based therapies which might boost microglia function are also being considered.</div><div class="MsoNoSpacing"><br />
</div><div class="MsoNoSpacing">Kate will soon be five years old, and we are excited about the promise this research holds and the opportunities it may present. We deeply thank you for supporting the Kate Foundation and our goal to help Kate and all children and adults with Rett syndrome live a more independent life. </div><div class="MsoNoSpacing"><br />
</div><div class="MsoNoSpacing">Thank you again for your generosity and support.</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Sincerely,</div><div class="MsoNormal">Jeff and Sarah Canavan</div><div class="MsoNormal"><br />
</div><div class="MsoNormal">Kate Foundation for Rett Syndrome Research</div><div class="MsoNormal">944 Main Street | Suite 202</div><div class="MsoNormal">Branford, Connecticut 06405</div><div class="MsoNormal"><a href="http://www.blogger.com/www.katefoundation.org">www.katefoundation.org</a></div><div class="MsoNormal"><br />
</div>Kate Foundation for Rett Syndrome Researchhttp://www.blogger.com/profile/07232019932376121387noreply@blogger.com0