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	<title>The Addi and Cassi Fund - Niemann Pick Type C &#187; Chris Hempel</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>2</slash:comments>
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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>
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		<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>
		</item>
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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>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>
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