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Adidas 5k for Rett Syndrome Research Trust

Joanna Clark is raising money for Reverse Rett
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Adidas Women's 5k Challenge · 11 September 2011 ·

Reverse Rett is a patient advocacy and research organisation focused on delivering treatment for Rett Syndrome to all affected. Read more here: reverserett.org.uk For Rett Registry UK: https://www.rettregistry.uk/

Story

<p><span style="font-size: small;"> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #ff00ff;"><strong><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">WHY AM I RUNNING FOR RETT SYNDROME RESEARCH TRUST UK?</span></span></span></strong></span></p> </span> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><strong><span style="font-family: Calibri; font-size: small;">Simple .... I love Amy. </span></strong></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><strong><span style="font-family: Calibri; font-size: small;">Most of you will know I am not much good with cardio, and running is my nemesis. There is only one thing that could convince me to don my trainers and lycra.&nbsp; </span></strong><strong><span style="color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Rett Syndrome is a neurodevelopmental disorder caused by a faulty gene that affects mainly girls. My niece Amy was diagnosed with it in June 2009, shortly before her second birthday. </span></span></span></strong></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Please support my race for Rett Syndrome Research Trust UK&nbsp;on 11 September and help give genuine hope for Amy and all the Rett girls and women across the UK and worldwide.&nbsp;&nbsp;</span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: black; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">You will find more information about Rett Syndrome&nbsp;and Rett Syndrome Research&nbsp;Trust UK&nbsp;below.&nbsp;&nbsp;&nbsp;Please donate whatever you can.&nbsp; Thank you. </span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #ff00ff;"><span style="font-size: small;"><span style="font-family: Calibri;"><strong><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;">ABOUT RETT SYNDROME</span></strong></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="font-size: small;"><span style="font-family: Calibri;"><strong><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;">Imagine the symptoms of autism, cerebral palsy, epilepsy and severe anxiety disorders in one little girl...</span></strong><strong>&nbsp;</strong></span></span></span></p> <p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="font-size: small;"><span style="font-family: Calibri;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;">Rett Syndrome is the most physically disabling of the autism spec-trum disorders.</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">It strikes at random in early childhood, affecting little girls almost exclusively.</span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">There is no treatment beyond supportive, and often ineffective, measures such as feeding tubes, bracing, orthopaedic and Gastro-intestinal surgeries, and medications for anxiety and seizures.</span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">First recognized only 25 years ago, the prevalence of Rett Syn-drome equals that of Cystic Fibrosis, Huntington&rsquo;s and Motor Neu-rone Disease but is vastly underfunded in comparison to those dis-orders</span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000; mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Many girls live into adulthood, requiring total, 24-hour-a-day care.</span></span></span></p> </p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #ff00ff;"><strong><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">WHY SUPPORT RETT SYNDROME RESEARCH?</span></span></span></strong></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><strong><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Now imagine those symptoms disappearing one by one...</span></span></span></strong></span></p> <p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><strong><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Rett Syndrome has been&nbsp;</span></span></span><span style="font-size: small;"><span style="font-family: Calibri;"><em><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;">reversed </span></em></span></span><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">in the lab. </span></span></span></strong></span></p> </p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Intensive research is being carried out to establish a way to repli-cate this in people</span></span></span></span></p> <p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Rett research has other advantages not available to other neurologi-cal conditions:</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">caused by an identified single gene</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">excellent lab models</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">links to a variety of neuropsychiatric disorders</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">an elite group of committed researchers</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Rett Syndrome Research Trust UK also has unique advantages:</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">One focus: research</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Financially lean and efficient</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Designed to be agile and responsive to changes in the field</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Collaboration with RSRT whose founders and advisors have been largely responsible for major advances in the field in the last decade</span></span></span></span></p> <p class="MsoNormal" style="line-height: normal; margin: 0cm 0cm 10pt; mso-margin-top-alt: auto; mso-margin-bottom-alt: auto;"><span style="color: #000000;"><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"><span style="font-family: Calibri;">Driven entirely by families whose only interest is in accelerating treatment</span></span></span></span></p> </p> <p> <p class="MsoNormal" style="margin: 0cm 0cm 10pt;"><span style="color: #808080;"><span style="font-family: Calibri; font-size: small;">&nbsp;</span></span></p> <p> <p><span style="color: #000000;"><strong><span style="mso-fareast-font-family: 'Times New Roman'; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-language: EN-GB;"><span style="font-size: small;"></span></span></strong></span></p> </p> </p> </p>

Donation summary

Total
£560.00
+ £125.00 Gift Aid
Online
£560.00
Offline
£0.00

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