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	<title>The Addi and Cassi Fund - Niemann Pick Type C &#187; 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>Meet The Children Who Are Resistant To Contracting Ebola, HIV-AIDS</title>
		<link>http://addiandcassi.com/meet-children-resistant-contracting-hivaids-ebola/</link>
		<comments>http://addiandcassi.com/meet-children-resistant-contracting-hivaids-ebola/#comments</comments>
		<pubDate>Wed, 28 Dec 2011 02:05:43 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[Childhood Alzheimers]]></category>
		<category><![CDATA[Cholesterol]]></category>
		<category><![CDATA[Department of Defense]]></category>
		<category><![CDATA[Ebola]]></category>
		<category><![CDATA[Herpes Simplex Virus]]></category>
		<category><![CDATA[HIV-Aids]]></category>
		<category><![CDATA[Ian Lipkin]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[RSV]]></category>
		<category><![CDATA[sickle cell anemia]]></category>
		<category><![CDATA[Vincent Racaniello]]></category>
		<category><![CDATA[Virology Blog]]></category>
		<category><![CDATA[Virus Hunter]]></category>
		<category><![CDATA[XMRV]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=3505</guid>
		<description><![CDATA[My life grows more surreal by the day. Four years ago, I was told that my eight year old identical twins have a fatal genetic cholesterol disease called Niemann Pick Type C (the &#8220;Childhood Alzheimer&#8217;s&#8221;) and they would likely not live to see their 10th birthday. Now I have learned from top virus scientists that [...]]]></description>
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		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>Why Washington Should Support ULTRA Act (H.R. 3737)</title>
		<link>http://addiandcassi.com/washington-support-ultra-act-hr-3737-create-jobs-patients-rare-diseases/</link>
		<comments>http://addiandcassi.com/washington-support-ultra-act-hr-3737-create-jobs-patients-rare-diseases/#comments</comments>
		<pubDate>Fri, 23 Dec 2011 03:19:10 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[CureTheProcess.org]]></category>
		<category><![CDATA[Emil Kakkis]]></category>
		<category><![CDATA[Energy and Commerce Committee]]></category>
		<category><![CDATA[EveryLife Foundation]]></category>
		<category><![CDATA[FDA Accelerated Approval Process]]></category>
		<category><![CDATA[H.R. 3737]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[Orphan Drug Act]]></category>
		<category><![CDATA[Rare Disease Legislative Advocates]]></category>
		<category><![CDATA[rare disese]]></category>
		<category><![CDATA[Representative Cliff Stearns]]></category>
		<category><![CDATA[Representative Ed Towns]]></category>
		<category><![CDATA[ULTRA ACT]]></category>
		<category><![CDATA[Unlocking Lifesaving Treatments for Rare diseases Act]]></category>
		<category><![CDATA[Valley of Death]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=3481</guid>
		<description><![CDATA[It&#8217;s great to see some representatives in Washington are finally starting to understand the real healthcare issue facing tens of millions of American&#8217;s afflicted with rare diseases. You can&#8217;t improve health if potential medications remain trapped in research and biotech&#8217;s &#8220;Valley of Death&#8221; and never reach patients. This week, U.S. Representatives Cliff Stearns (R-FL) and [...]]]></description>
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		<slash:comments>1</slash:comments>
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		<title>From The Valley of Death to The Valley of Cures &#8211; NIH TRND Program Supports Multiple Rare Diseases</title>
		<link>http://addiandcassi.com/nih-trnd-program-moving-rare-disease-treatments-valley-death-valley-cures/</link>
		<comments>http://addiandcassi.com/nih-trnd-program-moving-rare-disease-treatments-valley-death-valley-cures/#comments</comments>
		<pubDate>Wed, 16 Nov 2011 06:43:53 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[Alzheimers]]></category>
		<category><![CDATA[autoimmune pulmonary alveolar proteinosis]]></category>
		<category><![CDATA[Christopher P. Austin]]></category>
		<category><![CDATA[chronic lymphocytic leukemia]]></category>
		<category><![CDATA[creatine transporter deficiency]]></category>
		<category><![CDATA[cryptococcal meningitis]]></category>
		<category><![CDATA[Cyclodextrin]]></category>
		<category><![CDATA[Duchenne Muscular Dystrophy]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[fibrodysplasia ossificans progressiva]]></category>
		<category><![CDATA[Food and Drug Administration]]></category>
		<category><![CDATA[fragile X syndrome]]></category>
		<category><![CDATA[Francis S. Collins]]></category>
		<category><![CDATA[John McKew]]></category>
		<category><![CDATA[National Human Genome Research Institute]]></category>
		<category><![CDATA[National Instituees of Heath]]></category>
		<category><![CDATA[National Institute of Neurological Disorders and Stroke]]></category>
		<category><![CDATA[NCTT]]></category>
		<category><![CDATA[neonatal herpes simplex virus]]></category>
		<category><![CDATA[NHGRI]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[NIH]]></category>
		<category><![CDATA[NINDS]]></category>
		<category><![CDATA[rare disease]]></category>
		<category><![CDATA[Schistosomiasis]]></category>
		<category><![CDATA[sickle cell disease]]></category>
		<category><![CDATA[Therapeutics for Rare and Neglected Diseases program (TRND)]]></category>
		<category><![CDATA[TRND]]></category>
		<category><![CDATA[Valley of Death]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=3449</guid>
		<description><![CDATA[Thank you Dr. Francis Collins, Dr. Chris Austin, Dr. John McKew and others at the NIH who are all involved in driving the National Institutes of Health’s Therapeutics for Rare and Neglected Diseases (TRND) program forward. TRND has been a huge success since launching five pilot projects last year, including one program that focuses on [...]]]></description>
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		<slash:comments>0</slash:comments>
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		<title>National Institues of Health Announces Cyclodextrin Clincial Trial For Fatal Cholesterol Disease Called Niemann Pick Type C</title>
		<link>http://addiandcassi.com/nih-announces-cyclodextrin-trial-niemann-pick-type/</link>
		<comments>http://addiandcassi.com/nih-announces-cyclodextrin-trial-niemann-pick-type/#comments</comments>
		<pubDate>Tue, 16 Aug 2011 21:48:22 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[2-Hydroxypropyl-beta-Cyclodextrin]]></category>
		<category><![CDATA[Cholesterol]]></category>
		<category><![CDATA[Cyclodextrin]]></category>
		<category><![CDATA[Dr. Caroline Hastings]]></category>
		<category><![CDATA[Dr. Forbes “Denny” Porter]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[HPBCD]]></category>
		<category><![CDATA[intracerebroventricular cyclodextrin]]></category>
		<category><![CDATA[intrathecal cyclodextrin]]></category>
		<category><![CDATA[intravenous cyclodextrin]]></category>
		<category><![CDATA[Medtronic SynchroMed pump]]></category>
		<category><![CDATA[National Center for Advancing Translational Sciences]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[Niemann Pick TYpe C cats]]></category>
		<category><![CDATA[NIH Bench-to-Bedside Grant]]></category>
		<category><![CDATA[NIH cyclodextrin clinical trial]]></category>
		<category><![CDATA[NIHs Therapeutics for Rare and Neglected Diseases]]></category>
		<category><![CDATA[TRND]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=3369</guid>
		<description><![CDATA[Over the past three years, many Niemann Pick Type C families as well as physicians treating NPC patients worldwide have contacted Dr. Caroline Hastings and I regarding Addi and Cassi&#8217;s treatments with hydroxypropyl-beta-cyclodextrin. Since sharing our intravenous (IV) and intrathecal (IT) cyclodextrin treatment protocols with NPC families and doctors in the U.S. and other countries, [...]]]></description>
		<wfw:commentRss>http://addiandcassi.com/nih-announces-cyclodextrin-trial-niemann-pick-type/feed/</wfw:commentRss>
		<slash:comments>6</slash:comments>
		</item>
		<item>
		<title>FDA Filing Made Requesting Use of Medtronic SynchroMed Pump To Deliver Cyclodextrin To Brain</title>
		<link>http://addiandcassi.com/niemann-pick-type-treatment-update-fda-filing-requesting-medtronic-synchromed-pump-deliver-cyclodextrin-brain/</link>
		<comments>http://addiandcassi.com/niemann-pick-type-treatment-update-fda-filing-requesting-medtronic-synchromed-pump-deliver-cyclodextrin-brain/#comments</comments>
		<pubDate>Wed, 13 Apr 2011 23:03:04 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[Adrenoleukodystrophy]]></category>
		<category><![CDATA[Baclofen]]></category>
		<category><![CDATA[blood brain barrier]]></category>
		<category><![CDATA[CDER]]></category>
		<category><![CDATA[CDRH]]></category>
		<category><![CDATA[Center for Devices and Radiological Health]]></category>
		<category><![CDATA[Center for Drug Evaluation and Research]]></category>
		<category><![CDATA[Children's Hospital & Research Center Oakland]]></category>
		<category><![CDATA[Division of Gastroenterology Products]]></category>
		<category><![CDATA[Dr. Caroline Hastings]]></category>
		<category><![CDATA[Dr. Peter Sun]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[HPBCD]]></category>
		<category><![CDATA[hydroxyl-propyl-beta-cyclodextrin]]></category>
		<category><![CDATA[identical twins]]></category>
		<category><![CDATA[Johnson & Johnson]]></category>
		<category><![CDATA[Lorenzo's Oil]]></category>
		<category><![CDATA[Medtronic]]></category>
		<category><![CDATA[Medtronic SynchroMed® II Drug Infusion System]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[propofol]]></category>
		<category><![CDATA[rare disease]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=3308</guid>
		<description><![CDATA[To say I am pumped up  today is an understatement!  We&#8217;ve reached another historic milestone in our effort to treat Addi and Cassi with cyclodextrin!  Dr. Caroline Hastings at Children&#8217;s Hospital Research Center Oakland filed a 400+ page document with the FDA yesterday on behalf of the twins seeking a permanent solution to deliver hydroxyl-propyl-beta-cyclodextrin [...]]]></description>
		<wfw:commentRss>http://addiandcassi.com/niemann-pick-type-treatment-update-fda-filing-requesting-medtronic-synchromed-pump-deliver-cyclodextrin-brain/feed/</wfw:commentRss>
		<slash:comments>4</slash:comments>
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