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		<title>Sons of HD is now mobile</title>
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		<pubDate>Sun, 18 Dec 2011 02:18:34 +0000</pubDate>
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		<description><![CDATA[Sons of HD is now mobile! Thanks Paul for your help setting us up on this!]]></description>
			<content:encoded><![CDATA[<p>Sons of HD is now mobile! Thanks Paul for your help setting us up on this!</p>
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		<title>Promising New Treatment for Huntington&#8217;s Disease</title>
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		<pubDate>Fri, 25 Nov 2011 21:41:19 +0000</pubDate>
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		<description><![CDATA[By MIKAELA CONLEY (@mikaelaconley) Nov. 8, 2011 When Scott Falciglia was 10 years old, his parents sat him down to tell him that his 40-year-old mother, Alice, was diagnosed with Huntington&#8217;s disease, a devastating degenerative condition that breaks down nerve &#8230; <a href="http://sonsofhd.com/http:/sonsofhd.com/about.html">Continue reading <span class="meta-nav">&#8594;</span></a>]]></description>
			<content:encoded><![CDATA[<p>By MIKAELA CONLEY (@mikaelaconley)<br />
Nov. 8, 2011<br />
When Scott Falciglia was 10 years old, his parents sat him down to tell him that his 40-year-old mother, Alice, was diagnosed with Huntington&#8217;s disease, a devastating degenerative condition that breaks down nerve cells in the brains.</p>
<p>&#8220;They told me I was at risk and there&#8217;s no cure or treatment and it was very serious,&#8221; said Falciglia, 27, of South Norwalk, Conn.</p>
<p>The conversation set off a childhood and early adulthood in which he watched his mother&#8217;s physical and cognitive health decline. Every few months, he said, it seemed his mother lost the ability to perform another basic liberty or function.</p>
<p>&#8220;She couldn&#8217;t drive after she had a bad car wreck,&#8221; Falciglia said. &#8220;She reacted poorly to another car swerving in her direction and had a big accident. She had become unsafe to herself and others.&#8221;</p>
<p>Her speech and memory abilities declined and the twitches he had noticed in his mothers&#8217; toes and fingers as a boy soon turned into the &#8220;Huntington&#8217;s dance,&#8221; jerky involuntary movements that constantly came from her hands and body.</p>
<p>&#8220;She was often mistaken for being intoxicated or mentally retarded,&#8221; he said.</p>
<p>Her ability to swallow soon dissipated and she needed help putting her makeup on, doing her hair and going to the bathroom.</p>
<p>&#8220;The biggest word is just frustrating to watch my mother go through that,&#8221; Falciglia said. &#8220;Your mind doesn&#8217;t totally fall apart right away, but your body does. It must be such a suffocating feeling, knowing her mind is functioning and she can&#8217;t talk and say what she wants to say. She was a sharp woman and could understand for a long time, but couldn&#8217;t communicate.&#8221;</p>
<p>&#8220;Her body was a cage,&#8221; he said.</p>
<p>Falciglia&#8217;s mother died in 2008 after living with the disease&#8217;s symptoms for 14 years. She was 54.</p>
<p>There is no cure and there are few treatments available for Huntington&#8217;s disease patients, but a new study published in the Lancet Neurology found that a drug known as pridopidine seems well-tolerated and efficient in helping patients control involuntary movements.</p>
<p>&#8220;The study shows modest improvement of a variety of motor deficits without relevant side effects in patients with Huntington&#8217;s disease,&#8221; said Dr. Justo Garcia de Yebenes, lead author of the study, which was based in Madrid, Spain.&#8221;For the moment these results contribute to the symptomatic treatment of a variety of motor deficits in patients with this disease.&#8221;</p>
<p>The disease is a debilitating genetic disorder that affects about 30,000 Americans. The condition causes involuntary movements, coordination and speech and swallowing problems, along with dementia. Children of parents with a single mutated gene have a 50 percent chance of developing it.</p>
<p>Falciglia said his family can trace the disease back to his great-great-grandmother, during a time when doctors did not understand the symptoms or have a name for the condition. His grandfather died of the disease and three out of his grandfather&#8217;s five children &#8212; Falciglia&#8217;s mom, along with an aunt in late stages of the disease and an uncle who died &#8212; suffered the same illness.</p>
<p>Onset of the disease typically begins around 40 years old, and patients usually die 15 to 20 years after symptoms surface, according to the Huntington &#8216;s Disease Society of America.</p>
<p>Falciglia has not been tested for the disease, and plans to &#8220;follow the book&#8221;&#8211; most doctors recommend children of Huntington&#8217;s disease patients only get tested if they become noticeably symptomatic.</p>
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