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	<title>The Addi and Cassi Fund - Niemann Pick Type C</title>
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	<description>Treatments &#38; Cures for Niemann Pick Type C - Childhood Alzheimer&#039;s</description>
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		<title>FDAs Orphan Drug Workshop Featured in Wall Street Journal &#8211; Push To Cure Rare Diseases</title>
		<link>http://addiandcassi.com/fdas-orphan-drug-workshop-featured-in-wall-street-journal-push-to-cure-rare-diseases/</link>
		<comments>http://addiandcassi.com/fdas-orphan-drug-workshop-featured-in-wall-street-journal-push-to-cure-rare-diseases/#comments</comments>
		<pubDate>Wed, 10 Mar 2010 19:41:23 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[Amy Dockser Marcus]]></category>
		<category><![CDATA[Children's Hospital & Research Center Oakland]]></category>
		<category><![CDATA[Cholesterol]]></category>
		<category><![CDATA[Cyclodextrin]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[FDA Drug Workshop]]></category>
		<category><![CDATA[Food and Drug Administration]]></category>
		<category><![CDATA[Keck Graduate Institute]]></category>
		<category><![CDATA[Nevada]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[Office of Orphan Products Development]]></category>
		<category><![CDATA[Pulitzer Prize]]></category>
		<category><![CDATA[rare disease]]></category>
		<category><![CDATA[Reno]]></category>
		<category><![CDATA[Timothy Cote]]></category>
		<category><![CDATA[Wall Street Journal]]></category>

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		<description><![CDATA[
Below is a story that ran in today&#8217;s Wall Street Journal (Page A 3) on the FDA workshop I attended a few week ago at the Keck Graduate Institute in Claremont, CA.  We filed an orphan drug application for Cyclodextrin for the treatment of Niemann Pick Type C disease, an ultra rare cholesterol disease that [...]]]></description>
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		<title>FDA Does Not Approve Actelion&#8217;s Zavesca in US &#8211; Distressing News For Niemann Pick Type C Community</title>
		<link>http://addiandcassi.com/fda-does-not-approve-actelions-zavesca-in-us-distressing-news-for-niemann-pick-type-c-community/</link>
		<comments>http://addiandcassi.com/fda-does-not-approve-actelions-zavesca-in-us-distressing-news-for-niemann-pick-type-c-community/#comments</comments>
		<pubDate>Wed, 10 Mar 2010 04:09:54 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[Actelion]]></category>
		<category><![CDATA[Cyclodextrin]]></category>
		<category><![CDATA[Dementia]]></category>
		<category><![CDATA[identical twins]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[U.S. Food and Drug Administration]]></category>
		<category><![CDATA[Zavesca]]></category>

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		<description><![CDATA[

Actelion, the makers of Zavesca, today put out a brief statement saying that the U.S. Food and Drug Administration did not approve Zavesca and wants more information from the company on treating Niemann Pick Type C, a rare and dementing neurological disease that afflicts our six year old identical twins, Addi and Cassi.
Niemann Pick Type C disease is caused by [...]]]></description>
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		<slash:comments>1</slash:comments>
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		<title>Social Security Disability &#8216;Compassionate Allowance&#8217; &#8211; Only For Those Who are Impoverished?</title>
		<link>http://addiandcassi.com/social-security-disability-compassionate-allowance-requirements/</link>
		<comments>http://addiandcassi.com/social-security-disability-compassionate-allowance-requirements/#comments</comments>
		<pubDate>Sat, 06 Mar 2010 02:13:14 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Health Care Policy]]></category>
		<category><![CDATA[Compassionate Allowance Program]]></category>
		<category><![CDATA[National Organization for Rare Disorders]]></category>
		<category><![CDATA[Nevada]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[Social Security]]></category>
		<category><![CDATA[Social Security Disability]]></category>
		<category><![CDATA[Social Security State Listings]]></category>

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		<description><![CDATA[Today I called the Social Security Office in Nevada to find out about the compassionate allowance program for our twins. Last month, the Social Security Administration added 38 more conditions to the already 50 rare diseases and cancers designated for compassionate allowance, which provides expedited review of disability applications from people with severely disabling conditions. [...]]]></description>
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		<title>Rare Disease Idea Leads &#8216;Ideas For Change In America&#8217; Competition by Change.org</title>
		<link>http://addiandcassi.com/rare-disease-idea-leads-ideas-for-change-in-america-competition-by-change-org/</link>
		<comments>http://addiandcassi.com/rare-disease-idea-leads-ideas-for-change-in-america-competition-by-change-org/#comments</comments>
		<pubDate>Thu, 04 Mar 2010 04:42:35 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Health Care Policy]]></category>
		<category><![CDATA[Change.org]]></category>
		<category><![CDATA[Ideas For Change In America Winner]]></category>
		<category><![CDATA[Obama Administration]]></category>
		<category><![CDATA[rare disease]]></category>

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		<description><![CDATA[
Ideas for Change in America is a competition that empowers citizens to identify and build momentum around a diverse range of ideas for addressing the challenges our country faces.
From January &#8211; February 2010, more than 2,500 ideas were submitted and voted on by 100,000 people across the country. The top three rated ideas from each [...]]]></description>
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		<slash:comments>0</slash:comments>
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		<title>I am Green Beans and Ensure!</title>
		<link>http://addiandcassi.com/i-am-green-beans-and-ensure/</link>
		<comments>http://addiandcassi.com/i-am-green-beans-and-ensure/#comments</comments>
		<pubDate>Thu, 04 Mar 2010 02:34:25 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[NPC Family Stories]]></category>
		<category><![CDATA[Cholesterol]]></category>
		<category><![CDATA[Kids with dementia]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[progressive neurological condition]]></category>
		<category><![CDATA[rare disease]]></category>
		<category><![CDATA[Tylor Richardson]]></category>

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		<description><![CDATA[I am laughter until my belly hurts. I am strong, plus I have muscles. I am Illinois and Iowa. I am a brother with many parents. I am a sports fan. I am dogs and cats, horses and cows fan. I am green beans and Ensure. I am Happy Joe&#8217;s on a Friday night. I [...]]]></description>
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