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National Niemann-Pick Disease Foundation
Keywords
niemann, neman, nieman, pick, nieman-pick, nieman-pick, neman-pick, type-a, type-b, type-c, research, genetic, therapy, treatment
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The National Niemann-Pick Disease Foundation supports and promotes research to find treatments and a cure for all types of Niemann-Pick Disease, and we provide support services for individuals and families affected by NPD.
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<h1 class="pageTitle"><!-- InstanceBeginEditable name="title" --><img src="images/template/welcome.gif" alt="Welcome to the National Niemann-Pick Disease Foundation Website" width="734" height="79" /><!-- InstanceEndEditable --></h1>
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<p>The National Niemann-Pick Disease Foundation supports and promotes research
to find treatments and a cure for all types of Niemann-Pick Disease, and
we provide support services for individuals and families affected by NPD. <a href="aboutus_01.html">Our
Vision</a>...is a world where Niemann-Pick Disease is no longer a threat
to a full and productive life for patients and their families.<br />
</p>
<h4><a href="aboutus_02.html">A Message from NNPDF Chair Karen Quandt </a> <br />
</h4>
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<td width="740" height="52" align="center" valign="top"><p><strong><a href="familyservices_03.html" class="style4"><br />
NNPDF's 20th Annual Family Support and Medical Conference Thurs., Aug. 16 - Sun., Aug. 19 Music City - Nashville, Tennessee! </a></strong><br />
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<td width="256" height="339" align="center" valign="top" bgcolor="#FFFFCC"><table width="251" height="347" border="3" bordercolor="#FFFFFF">
<tr valign="top">
<td width="237" height="337" align="center" valign="top"> <h2>NNPDF to Mark 20 Years of Helping Families and Advancing Research <br />
in 2012</h2>
<p><a href="NNPDF20thAnniversary2012.html"><img src="images/20thanniversarylogoFINALsmallsize.JPG" alt="20th anniversary logo" width="214" height="138" border="0" /></a></p>
<h2><span class="style51"><span class="style60"><a href="NewsLinePage2012.html#TwentiethAnniversary"><br />
</a><a href="NNPDF20thAnniversary2012.html">Read more about this milestone</a></span></span></h2></td>
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. </td>
<td width="6" valign="top"> </td>
<td width="240" valign="top" bgcolor="#CCFFFF"><a href="http://www.expressionofhope.com" target="_blank"></a>
<table width="228" height="111" border="0" align="center" bordercolor="#FFFFFF" bgcolor="#CCFFFF">
<tr valign="top">
<td width="116" height="107" valign="middle" bgcolor="#CCFFFF"><a href="npdisease_14.html"><img src="images/scientistinlabresized.JPG" alt="scientist in lab" width="115" height="109" border="0" /></a></td>
<td width="102" valign="top" bgcolor="#CCFFFF"><h2 align="center"><a href="npdisease_14.html#PromisingTherapiesAbstracts"></a>
Niemann-Pick Disease Research </h2></td>
</tr>
</table>
<div align="center">
<h5 class="style1">NEW! Requests for Applications (RFAs) - Deadlines May 1, 2012 </h5>
<h5 class="style1"> <a href="npresearch_15.html">2012 Pentchev Fellowship (NPC)</a> </h5>
<p class="style44"><a href="SchuchmanFellowshipApplicationInfo.html">2012 Schuchman Fellowship (ASMD)</a> </p>
<h5 class="style1"><a href="Cyclodextrin.html"><br />
Update on Plans for NIH <br />
Cyclodextrin Trial</a></h5>
<h5><a href="aboutus_14.html#WSJCycloArticleJune22"></a><a href="npdisease_14.html#DrCollinsWebinar"></a><br />
<a href="aboutus_14.html#NPCDiagnosisViaBloodTest">NPC to be diagnosed via blood test</a></h5>
</div></td>
<td width="9" valign="top"> </td>
<td width="225" valign="top" bgcolor="#FFFFCC"><h2><a href="NewsLinePage2012.html"><img src="images/misc/btn_newsline.gif" alt="Foundation Newsline" name="btn_newsline1" width="210" height="49" border="0" id="btn_newsline1" /></a></h2>
<ul>
<li><a href="NewsLinePage2012.html">NewsLine/Updates</a></li>
<li><a href="donorinfo_13.html">Upcoming Events</a></li>
<li><strong> <a href="documents/NNPDFFamilyMembFormrevMarch2010.doc">Membership Form</a></strong></li>
<li><a href="album_01.html"></a><a href="familyservices_04.html"><strong>Newsletters </strong></a></li>
<li><a href="media_05.html">NPD Posters and Videos </a></li>
<li><a href="http://www.npdf.blogspot.com/">NNPDF Blog</a> </li>
<li><a href="http://www.facebook.com/group.php?gid=29559569806">Facebook</a></li>
<li><a href="IndexofPages.html">Index of Web Site Pages</a></li>
<li><a href="familyservices_03.html">2012 Family Conference</a> </li>
<li><a href="familyservices_03.html">2011 Family Conference Photos/Slideshows</a></li>
<li><a href="PicksDisease.htm">What is Pick's Disease?</a></li>
</ul> </td>
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<tr valign="top">
<td width="133" height="134" align="center" valign="middle" bgcolor="#CCFFFF"><a href="WorldRareDiseaseDay.html"></a>
<h4 align="center"><img src="images/ScientistwithmicroscopeMar2012_000.JPG" width="110" height="137" alt="Scientist with microscope" /></h4> </td>
<td width="609" align="center" valign="middle" bgcolor="#CCFFFF"><h4 align="center">The NNPDF is pleased to announce a <a href="EdwardSchuchmanResearchFellowship.html">Request for Applications</a> for the first Edward H. Schuchman Postdoctoral Research Fellowship for study of the biology of Acid Sphingomyelinase Deficiency (ASMD; Types A and B Niemann-Pick Disease). <br />
<br />
</h4>
<h4 align="center">Applications are due May 1, 2012, with the fellowship to begin September 1, 2012.</h4>
<h4 align="center"><a href="SchuchmanFellowshipApplicationInfo.html">More information and application procedure</a></h4></td>
</tr>
</table>
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<td height="52" align="center" valign="top" nowrap="nowrap" bgcolor="#FFFFCC"><p><a href="NewsLinePage2012.html#FamConf2012" class="centered style5"><strong><span class="style1"><br />
NEW!</span> PERSEVERE Window Decals Available! Proceeds Benefit the NNPDF</strong></a></p>
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<h2 class="subheadBanner">Foundation News:</h2>
<table width="98%" border="0" cellpadding="0" cellspacing="0" bordercolor="#003399">
<tr>
<td width="66%" rowspan="2" valign="top"><ul>
<li style="list-style:none"><a href="aboutus_14.html" onmouseout="MM_swapImgRestore()" onmouseover="MM_swapImage('btn_newsline','','images/misc/btn_newsline_on.gif',1)"><img src="images/misc/btn_newsline.gif" alt="Foundation Newsline" name="btn_newsline" width="210" height="49" border="0" id="btn_newsline" /></a><br />
<em>Stay informed via these foundation Web site & announcement
updates</em></li>
<li><strong><a href="donorinfo_13.html">Upcoming</a> and <a href="RecentEvents2011and2012_000.html">Recent</a> Awareness
and Fundraising Events </strong></li>
<li><strong><span class="style1 style1"><a href="OnlineAuction.html"></a></span></strong><a href="aboutus_14.html#CycloTrialUpdateNov2011">Update on NIH Plans for Cyclodextrin Clinical Trial for NPC</a> </li>
<li><a href="aboutus_14.html#GenzymeOctAwarenessCampaign2011"></a> <a href="NewsLinePage2012.html#FamConf2012">2012 NNPDF Family Conference Being Planned for Nashville, TN</a></li>
<li><strong><a href="aboutus_14.html#SiteNavigationTips">Need Help Finding the Info You Need? Here It Is!</a></strong></li>
</ul></td>
<td height="59" colspan="2" align="center" valign="top" class="textSmall"><a href="store.html#PuppiesCalendar2010"></a> <h4><a href="WorldRareDiseaseDay.html#DenimandGenes"></a><a href="http://partners.guidestar.org/controller/searchResults.gs?action_donateReport=1&partner=networkforgood&ein=35-1844264"><img src="images/donatenowlogo2.gif" alt="Donate Now button" width="167" height="53" border="0" /></a></h4></td>
</tr>
<tr>
<td width="18%" height="92" align="center" valign="top"><h5><a href="InternationalLinksandInfo.html"><img src="images/globesurroundedbyhandscropped.JPG" alt="earth graphic" width="91" height="84" border="0" /></a></h5></td>
<td width="16%" align="center" valign="middle"><a href="InternationalLinksandInfo.html"><strong>International Niemann-Pick Disease Organizations </strong></a></td>
</tr>
</table>
<h2 class="subheadBanner">Research News & Announcements: </h2>
<table width="99%" border="0" cellpadding="0" cellspacing="0">
<tr>
<td width="80%" height="200" valign="top"><br />
<ul>
<li><span class="style44">NEW </span><a href="NewsLinePage2012.html#RFA2012PentchevFellowships">Fellowships and Grants</a><br />
<a href="PeterPentchevResearchFellowship.html">2012 Pentchev Fellowship RFA (study of Niemann-Pick Disease Type C)</a> <br />
<a href="SchuchmanFellowshipApplicationInfo.html">2012 Schuchman Fellowship RFA (study of ASMD; Types A & B Niemann-Pick Disease)</a> <br />
<a href="npresearch_04.html">NNPDF-Funded Research</a> <br />
</li>
<li><a href="CyclodextrinClinicalTrialNIH.html">Update on Plans for Cyclodextrin Trial for NPC at NIH </a></li>
<li><a href="aboutus_14.html#WSJCycloArticleJune22">Cyclodextrin Results in Mice May Help Shape Clinical Trial for NPC</a></li>
<li><a href="npdisease_14.html">Latest Research Update Overview </a> </li>
<li><a href="npdisease_14.html#SturleyHDACPaper">Two New Papers on HDAC Inhibitors</a></li>
<li><a href="npdisease_14.html">Scientific Conference on NPC Hosted by Notre Dame College of Science</a> 7/11 </li>
<li><a href="npdisease_14.html#May192011ResearchUpdates">Research Updates: WORLD Symposium, Gordon Conference, NPC Update</a> 5/11</li>
<li><a href="FellowshipsFunded.html">Research Fellowships - October 2011 Progress Updates</a> 10/11 </li>
<li><a href="CyclodextrinClinicalTrialNIH.html">NIH to Develop Clinical Trial Utilizing Cyclodextrin - Conference Call May 2</a> 4/11<br />
</li>
<li><a href="npdisease_14.html#ValproicAcid">Paper Published on Study of Histone Deacetylase Inhibitor for Use in NPC</a> 4/11 <br />
</li>
<li><a href="npdisease_14.html#DrCollinsWebinar">Webinar with NIH Director Dr. Francis Collins re: Proposed National Center for Advancing Translational Sciences</a> 3/11 </li>
<li><a href="aboutus_14.html#GenzymeUpdateJan2011">Genzyme Update on Enzyme Replacement Therapy Trial (ASMD/Types A/B)</a> 1/11 </li>
<li><a href="aboutus_14.html#NPCDiagnosisViaBloodTest">Diagnosis of NPC may soon be possible via blood test</a> 11/10 </li>
<li><a href="aboutus_14.html#CycloIntrathecalAdministration">FDA Clearance for Experimental Intrathecal Administration of Cyclodextrin</a> 9/10 </li>
<li><a href="npdisease_09.html#FDACompleteResponseLetter">Actelion receives "complete response letter" from FDA Regarding Zavesca </a> 3/10 </li>
<li><a href="npdisease_09.html#CanadaApprovesZavesca">Canada Approves Zavesca</a> 3/10 </li>
</ul></td>
<td width="20%" align="center" valign="top" class="textSmall"><p><img src="images/misc/10847111.jpg" alt="Dr Marc Patterson" width="125" height="150" border="1" /><br />
<a href="http://podcasts.mayoclinic.org/2008/07/11/niemann-pick-disease-type-c/" target="_blank"><strong>Mayo
Clinic Podcast<br />
featuring
Dr Marc Patterson<br />
on
Niemann-Pick Type C.</strong></a></p> </td>
</tr>
</table>
<h2 class="subheadBanner">Family Resources & Support:</h2>
<table width="99%" border="0" cellpadding="0" cellspacing="0">
<tr>
<td width="77%" height="365" valign="top"><ul>
<li><a href="MonicaTaillefer.html">Taillefer Family Story - "Tiny but Mighty" Baby Monica </a> 11/10 </li>
<li><a href="documents/NPWinter2010WEBFILE.pdf">Winter 2010 NNPDF Newsletter</a> <a href="documents/CCNNPDFYEARENDLETTERREVISEDDEC7FINAL.pdf">Canadian Chapter Winter 2010</a> 12/10 </li>
<li><strong><span class="style39">NNPDF Annual Family Support and Medical Conference</span><br />
</strong> <span class="style44">NEW </span><a href="familyservices_03.html">2012 Family Conference Being Planned for Nashville, TN</a> (1/12) <span class="style44"><br />
</span><a href="familyservices_03.html">2011 Conference - Norfolk, Virginia ~
Links to Photos/Slideshows</a><a href="images/FullGroupShotSatBanquet_001.JPG"><br />
</a><a href="familyservices_03.html">2010 Conference - Toronto - See Photos</a></a> <br />
<strong><a href="familyservices_03.html">2009 Conference in Seattle - View Photos and a Slideshow</a></strong></li>
<li><a href="aboutus_14.html#SSACompassionateAllowance">Social Security Expands "Compassionate Allowance" Conditions List</a> 2/10 </li>
<li><a href="NPDOctoberAwarenessMonth2011.htm">2011 Niemann-Pick Disease October Awareness Month</a> </li>
<li><a href="NPDOctoberAwarenessMonth2010.htm">2010 Niemann-Pick Disease October Awareness Month </a></li>
<li><strong><a href="familyservices_11.html">New
Genetic Alliance Publication: Making Sense of Your Genes</a></strong></li>
<li><strong><a href="familyservices_09.html">EQUIPMENT
EXCHANGE</a> - <a href="familyservices_09.html#CarseatDec2011">Car Seat for Older Child Available</a> <br />
<a href="familyservices_09.html#MotionTablewithVibraGlide">Needed: Motion Table with Vibra-Glide</a> </strong><strong><a href="familyservices_09.html#EquipOffered">Wheelchair
Available</a> <a href="familyservices_09.html#EquipOffered">Car
Bed Available</a></strong></li>
<li><strong><a href="familyservices_10.html">Understanding
Niemann-Pick Disease Type C and its potential treatments. </a></strong></li>
<li><strong><a href="familyservices_38.html">State-specific
resources to help NPD families</a></strong></li>
<li><strong><a href="familyservices_22.html">CMS
- ASK MEDICARE: support and information for caregivers</a></strong></li>
<li><strong><a href="familyservices_22.html"><span class="style50"><a href="http://www.youtube.com/watch?v=0vt0yqdbPPo"><span class="style49">"Here for You Always" Music Video Featuring Our Members</span></a></span><br />
<br />
</a></strong>
<table width="543" height="57" border="0" align="center">
<tr valign="top">
<td width="116"><a href="http://www.nnpdf.ca"><img src="images/NNNPDFlogocol.jpg" alt="CCNNPDF logo" width="114" height="69" border="0" /></a></td>
<td width="417"><a href="http://www.nnpdf.ca">Canadian Chapter National Niemann-Pick Disease Foundation</a><br />
The CCNNPDF works with the NNPDF to promote research, provide education, information and referrals, and to support families who have received a diagnosis of Niemann-Pick Disease. Visit <a href="http://www.nnpdf.ca">www.nnpdf.ca </a></td>
</tr>
</table>
<strong><a href="familyservices_22.html"> </a></strong></li>
</ul></td>
<td width="23%" align="center" valign="top" class="textSmall"><h4><a href="npdisease_19.html" class="style53">The Progression of NPC in Two Children's Lives</a> <br />
</h4>
<table width="164" height="416" border="0" bordercolor="#0000FF">
<tr valign="top">
<td height="112" colspan="2" align="center" valign="top" bgcolor="#FFFFFF"><a href="npdisease_19.html"><img src="images/93happy_001.jpg" alt="Adam three years old" width="103" height="107" border="0" align="middle" /></a></td>
</tr>
<tr valign="top">
<td colspan="2" align="center" valign="top" bgcolor="#FFFFFF">Adam Ward, NPC<br />
1/13/90 - 6/4/00 </td>
</tr>
<tr valign="top">
<td colspan="2" align="center" valign="top" bgcolor="#FFFFFF"><a href="npdisease_19.html#StaceyVorpahl"><img src="images/Staceybeachcolorresized.JPG" alt="Stacey Vorpahl" width="107" height="123" border="0" /></a></td>
</tr>
<tr valign="top">
<td height="61" colspan="2" align="center" valign="top" bgcolor="#FFFFFF">Stacey Vorpahl, NPC<br />
1/3/85 - 10/9/04 </td>
</tr>
<tr valign="top">
<td width="74" height="77" align="center" valign="middle" bgcolor="#FFFFFF"><span class="style52"><a href="http://npatimeline.blogspot.com/">Mia's NPA Timeline</a> </span> <br />
Mia Walts, NPA<br />
5/31/09 - 10/29/11 </td>
<td width="80" align="center" valign="middle" bgcolor="#FFFFFF"><img src="images/MiaWaltsresized_000.JPG" width="79" height="76" alt="Mia Walts" /></td>
</tr>
</table> </td>
</tr>
</table>
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<p> “The National Niemann-Pick Disease Foundation (NNPDF) does not engage
in the practice of medicine. It is not a medical authority nor does it
claim to have medical knowledge. This site is an educational service
of the National Niemann-Pick Disease Foundation and is not meant to provide
diagnostic or treatment advice. Information contained or suggested on
this Web site does not constitute medical advice. For all information
related to care, medication or treatment, the NNPDF recommends consulting
a physician to determine if information presented is applicable. Please
review these additional <a href="CyberCautions.html">cautions</a> about medical information
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<p>This Web site is a service of the National Niemann-Pick Disease Foundation's Family Services Program, made possible by the financial support of our member families and other generous donors and grantors. This site receives no government funding, nor does it host or receive funding from advertising or from the display of commercial content. </p>
<p>This site complies to the <a href="http://www.hon.ch/HONcode/Conduct.html" target="_blank">HONcode
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<td width="193" height="26" align="center" valign="middle"><strong>Web Site updated 3/12/2012 </strong></td>
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