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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>IND Application Filed With FDA To Bring Cyclodextrin Into The Brain To Treat Fatal Childhood Cholesterol Disease</title>
		<link>http://addiandcassi.com/ind-filings-intratehcal-cyclodextrin-treatment-fda/</link>
		<comments>http://addiandcassi.com/ind-filings-intratehcal-cyclodextrin-treatment-fda/#comments</comments>
		<pubDate>Sat, 17 Jul 2010 17:03:08 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Cyclodextrin]]></category>
		<category><![CDATA[Childhood Alzheimers]]></category>
		<category><![CDATA[Children's Hospital & Research Center Oakland]]></category>
		<category><![CDATA[CYCLO]]></category>
		<category><![CDATA[dementia treatment]]></category>
		<category><![CDATA[Dr. John Dietschy]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[Hydroxy Propel Beta Cyclodextrin]]></category>
		<category><![CDATA[intrathecal cyclodextrin]]></category>
		<category><![CDATA[Investigational New Drug Application]]></category>
		<category><![CDATA[New Cholesterol Drug]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[NINDS]]></category>
		<category><![CDATA[rare disease]]></category>
		<category><![CDATA[UT Southwestern]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=2873</guid>
		<description><![CDATA[After months and months of work and input by doctors and researchers, Dr. Caroline Hastings at Children&#8217;s Hospital Research Center Oakland filed our second Investigational New Drug application (IND) with the FDA on July 14, 2010.
The 200+ page IND filing details our request to deliver hydroxy-propel-beta-cyclodextrin (HPBCD or CYCLO) directly into Addi and Cassi&#8217;s central [...]]]></description>
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		<title>Alzheimer&#8217;s Patients Presenilin 1 Gene Defect Causes A Lysosomal Storage Disorder</title>
		<link>http://addiandcassi.com/alzheimers-patients-presenilin-1-gene-defect-causes-a-lysosomal-storage-disease/</link>
		<comments>http://addiandcassi.com/alzheimers-patients-presenilin-1-gene-defect-causes-a-lysosomal-storage-disease/#comments</comments>
		<pubDate>Thu, 10 Jun 2010 23:47:13 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[2-Hydroxypropyl-beta-Cyclodextrin]]></category>
		<category><![CDATA[Addi and Cassi Hempel]]></category>
		<category><![CDATA[Alzheimer-Related PS1 Mutations]]></category>
		<category><![CDATA[Alzheimers]]></category>
		<category><![CDATA[Cyclodextrin]]></category>
		<category><![CDATA[Dementia]]></category>
		<category><![CDATA[Dr. Ralph Nixon]]></category>
		<category><![CDATA[Journal Cell]]></category>
		<category><![CDATA[Lysosomal Proteolysis]]></category>
		<category><![CDATA[Lysosomal Storage Disease]]></category>
		<category><![CDATA[Niemann Pick Type C disease]]></category>
		<category><![CDATA[NYU Langone Medical Center]]></category>
		<category><![CDATA[oxysterols]]></category>
		<category><![CDATA[presenilin 1 gene]]></category>
		<category><![CDATA[rare disease]]></category>
		<category><![CDATA[Silberstein Alzheimer's Institute]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=2866</guid>
		<description><![CDATA[A research paper by Dr. Ralph Nixon, director of the Center of Excellence on Brain Aging and the Silberstein Alzheimer&#8217;s Institute at NYU Langone Medical Center, was published today in the journal Cell reporting that Alzheimer’s patients with genetic mutations in the presenilin 1 gene have disruptions in the cellular protein recycling process mechanisms in [...]]]></description>
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		<title>Orphan Drug Act  &#8211; A Collosal Failure Considering Rare Disease Drug Statistics</title>
		<link>http://addiandcassi.com/orphan-drug-act-a-collosal-failure-considering-rare-disease-drug-statistics/</link>
		<comments>http://addiandcassi.com/orphan-drug-act-a-collosal-failure-considering-rare-disease-drug-statistics/#comments</comments>
		<pubDate>Sun, 23 May 2010 18:34:28 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[Cyclodextrin]]></category>
		<category><![CDATA[Dave Obey]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[FDA Orphan Drug Database]]></category>
		<category><![CDATA[helthcare crisis]]></category>
		<category><![CDATA[Kakkis Every Life Foundation]]></category>
		<category><![CDATA[National Organization of Rare Disorders]]></category>
		<category><![CDATA[Office of Orphan Products Development]]></category>
		<category><![CDATA[Orphan Drug Act]]></category>
		<category><![CDATA[Orphan drug designations]]></category>
		<category><![CDATA[rare disease drug development]]></category>
		<category><![CDATA[Rare Disease Statistics]]></category>
		<category><![CDATA[U.S. House Appropriations Committee]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=2850</guid>
		<description><![CDATA[For the past week, I have been obsessing over rare disease statistics ever since it was published that 80% of all rare diseases are &#8216;ultra orphans&#8217; &#8211; affecting 6,000 people per disease state or less &#8211; and only 15% of all rare disease drug applications filed with the FDA are for &#8216;ultra orphans.&#8217;
Yesterday, I posted [...]]]></description>
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		<title>New FDA &#8216;Rare Disease&#8217; Division Being Proposed to U.S. House Committee on Appropriations</title>
		<link>http://addiandcassi.com/new-fda-rare-disease-division-being-proposed-to-u-s-house-committee-on-appropriations/</link>
		<comments>http://addiandcassi.com/new-fda-rare-disease-division-being-proposed-to-u-s-house-committee-on-appropriations/#comments</comments>
		<pubDate>Sun, 23 May 2010 01:41:24 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[2011 Ag-Rural Development-FDA Appropriations bill]]></category>
		<category><![CDATA[BioMedical Insights]]></category>
		<category><![CDATA[Center for Drug Evaluation and Research (CDER)]]></category>
		<category><![CDATA[Chairman David Obey]]></category>
		<category><![CDATA[Chairman Jerry Lewis]]></category>
		<category><![CDATA[Chairwoman Rosa DeLauro]]></category>
		<category><![CDATA[dementia crisis]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[Food and Drug Administration]]></category>
		<category><![CDATA[Genetic rare diseases]]></category>
		<category><![CDATA[Kakkis Every Life Foundation]]></category>
		<category><![CDATA[NORD]]></category>
		<category><![CDATA[Orphan Drug Act]]></category>
		<category><![CDATA[Orphan drug designations]]></category>
		<category><![CDATA[Ranking Member Jack Kingston]]></category>
		<category><![CDATA[rare disease]]></category>
		<category><![CDATA[Rare Disease Statistics]]></category>
		<category><![CDATA[Ultra Orphans]]></category>
		<category><![CDATA[United States House Committee on Appropriations]]></category>
		<category><![CDATA[Wall Street Journal]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=2819</guid>
		<description><![CDATA[The Kakkis Every Life Foundation is leading the effort to request $10 million in the fiscal year 2011 Ag-Rural Development-FDA Appropriations bill directing the U.S. Food and Drug Administration to establish a new review division for Biochemical and Genetic Diseases within the Center for Drug Evaluation Research (CDER), Office of New Drugs.
A letter from a [...]]]></description>
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		<item>
		<title>Kids Living With Dementia Diagnosis &#8211; 4 Year Old Johnathan Spenser&#8217;s Story</title>
		<link>http://addiandcassi.com/2807/</link>
		<comments>http://addiandcassi.com/2807/#comments</comments>
		<pubDate>Wed, 19 May 2010 16:02:12 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[NPC Family Stories]]></category>
		<category><![CDATA[Addi and Cassi Hempel]]></category>
		<category><![CDATA[Childhood Alzheimers]]></category>
		<category><![CDATA[Dementia]]></category>
		<category><![CDATA[Dominican Hospital]]></category>
		<category><![CDATA[Gilroy Dispatch]]></category>
		<category><![CDATA[Johnathan Spencer]]></category>
		<category><![CDATA[Lucile Packard Children's Hospital]]></category>
		<category><![CDATA[National Niemann-Pick Disease Foundation]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=2807</guid>
		<description><![CDATA[
  Johnathan Spencer has Niemann Pick Type C disease like Addi and Cassi.
Embracing every moment
Thursday, April 29, 2010
By Sara Suddes (ssuddes@gilroydispatch.com):  Photo by: Lora Schraft, Staff Photographer, Gilroy Dispatch  
Every morning, Johnathan Spencer&#8217;s mother dissolves the contents of a pill containing an experimental drug into a cup of water, draws the solution into a syringe and squirts the foul [...]]]></description>
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