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	<title>The Addi and Cassi Fund - Niemann Pick Type C &#187; rare disease</title>
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	<description>Treatments &#38; Cures for Niemann Pick Type C - Childhood Alzheimer&#039;s</description>
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		<title>Rare Disease Day 2012 &#8211; Spread This Call To Action To Make A Difference!</title>
		<link>http://addiandcassi.com/rare-disease-day-2012-difference/</link>
		<comments>http://addiandcassi.com/rare-disease-day-2012-difference/#comments</comments>
		<pubDate>Mon, 16 Jan 2012 01:42:51 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[#1Mil4RARE]]></category>
		<category><![CDATA[Amyotrophic lateral sclerosis]]></category>
		<category><![CDATA[Cholesterol]]></category>
		<category><![CDATA[Cystic Fibrosis]]></category>
		<category><![CDATA[denim ribbon]]></category>
		<category><![CDATA[Ewing's Sarcoma]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[Friedreich's Ataxia]]></category>
		<category><![CDATA[Global Genes Projec]]></category>
		<category><![CDATA[Hemophilia]]></category>
		<category><![CDATA[Krabbe disease]]></category>
		<category><![CDATA[Langerhans Cell Histiocytosis]]></category>
		<category><![CDATA[Myelin Repair Foundation]]></category>
		<category><![CDATA[Niemann Pick Type C disease]]></category>
		<category><![CDATA[NIH]]></category>
		<category><![CDATA[rare disease]]></category>
		<category><![CDATA[Rare Disease Day 2012]]></category>
		<category><![CDATA[Scott Johnson]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=3538</guid>
		<description><![CDATA[World Rare Disease Day 2012 is coming up on February 29th.  Consider these staggering statistics. Each year, 139 BILLION U.S. dollars are invested in medical research &#8212; much of it from tax payers Each year, 800,000 papers are published in medical journals by scientists Each year on average, ONLY 21 new drugs are approved by [...]]]></description>
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		<slash:comments>3</slash:comments>
		</item>
		<item>
		<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>Moms Receive EU Orphan Drug Designation From European Medicines Agency For Novel Cholesterol Drug Called Cyclodextrin</title>
		<link>http://addiandcassi.com/ema-grants-advocate-moms-orphan-drug-designation-cyclodextrin-treat-fatal-cholesterol-disease-called-niemann-pick-type/</link>
		<comments>http://addiandcassi.com/ema-grants-advocate-moms-orphan-drug-designation-cyclodextrin-treat-fatal-cholesterol-disease-called-niemann-pick-type/#comments</comments>
		<pubDate>Wed, 14 Sep 2011 21:43:24 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Featured Stories]]></category>
		<category><![CDATA[Addi and Cassi Hempel]]></category>
		<category><![CDATA[cholesterol drug]]></category>
		<category><![CDATA[Committee for Orphan Medicinal Products]]></category>
		<category><![CDATA[Dr. Caroline Hastings]]></category>
		<category><![CDATA[Dr. Jordi Llinares]]></category>
		<category><![CDATA[EMA]]></category>
		<category><![CDATA[European Medicines Agency]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[HPBCD]]></category>
		<category><![CDATA[hydroxy-propyl-beta-cyclodextrin]]></category>
		<category><![CDATA[Niemann-Pick Research Foundation]]></category>
		<category><![CDATA[orphan disease]]></category>
		<category><![CDATA[Orphan Drug Designation]]></category>
		<category><![CDATA[rare disease]]></category>
		<category><![CDATA[Single Orphan Drug Designation Annual Report]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=3407</guid>
		<description><![CDATA[Last year, after Dr. Caroline Hastings and I received the U.S. Food and Drug Administration orphan drug designation for Hydroxy-propyl-beta-cyclodextrin (HPBCD) for the treatment of Niemann Pick Type C disease, I was contacted by Sue French. Sue lives in the United Kingdom and her son William is also afflicted with the rare and fatal genetic [...]]]></description>
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		<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>
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		<slash:comments>4</slash:comments>
		</item>
		<item>
		<title>Insulin Therapy and Alzheimer&#8217;s &#8211; Could Cyclodextrin Sugar Act on Insulin and Glucose Metabolism?</title>
		<link>http://addiandcassi.com/insulin-therapy-alzheimers-cyclodextrin-sugar-act-insulin-glucose-metabolism/</link>
		<comments>http://addiandcassi.com/insulin-therapy-alzheimers-cyclodextrin-sugar-act-insulin-glucose-metabolism/#comments</comments>
		<pubDate>Mon, 11 Apr 2011 02:11:19 +0000</pubDate>
		<dc:creator>Chris Hempel</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Addi and Cassi]]></category>
		<category><![CDATA[Alzheimers]]></category>
		<category><![CDATA[ataxia]]></category>
		<category><![CDATA[Ataxia Telangiectasia]]></category>
		<category><![CDATA[Children's Hospital of Michigan]]></category>
		<category><![CDATA[Cyclodextrin]]></category>
		<category><![CDATA[Dr. Harry Chugani]]></category>
		<category><![CDATA[Glucose PET scan]]></category>
		<category><![CDATA[HPBCD]]></category>
		<category><![CDATA[hydroxy-propyl-beta-cyclodextrin]]></category>
		<category><![CDATA[identical twins]]></category>
		<category><![CDATA[insulin]]></category>
		<category><![CDATA[neurodegeneration]]></category>
		<category><![CDATA[Niemann Pick Type C]]></category>
		<category><![CDATA[Paresh Dandona]]></category>
		<category><![CDATA[Purkinje cells]]></category>
		<category><![CDATA[Purkinje neurons]]></category>
		<category><![CDATA[rare disease]]></category>
		<category><![CDATA[Rosiglitazone]]></category>
		<category><![CDATA[Steve Walkley]]></category>
		<category><![CDATA[University at Buffalo]]></category>

		<guid isPermaLink="false">http://addiandcassi.com/?p=3301</guid>
		<description><![CDATA[Recently reports in the news shows how insulin therapy may be a treatment for Alzheimer&#8217;s.  Basically, a low dose of insulin has been found to suppress the expression in the blood of four precursor proteins involved in the pathogenesis of Alzheimer&#8217;s disease, according to research by University at Buffalo endocrinologists.  Paresh Dandona, MD, PhD, University [...]]]></description>
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		<slash:comments>4</slash:comments>
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