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	<title>Brisan and Parker Stults - Fighting Niemann-Pick Type C - The Childhood Alzheimer&#039;s - Blog.BriParDun.com &#187; News</title>
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		<title>Social Security Adds 38 New Medical Conditions that Qualify for Disability Help</title>
		<link>http://www.blog.bripardun.com/2010/02/455/</link>
		<comments>http://www.blog.bripardun.com/2010/02/455/#comments</comments>
		<pubDate>Sat, 13 Feb 2010 05:12:00 +0000</pubDate>
		<dc:creator>Dad</dc:creator>
				<category><![CDATA[News]]></category>
		<category><![CDATA[Niemann-Pick Type C]]></category>
		<category><![CDATA[Social Secuirty]]></category>
		<category><![CDATA[Brisan Stults]]></category>
		<category><![CDATA[Jennifer Stults]]></category>
		<category><![CDATA[Michael Stults]]></category>
		<category><![CDATA[NP-C]]></category>
		<category><![CDATA[Parker Stults]]></category>
		<category><![CDATA[Rare Diseases]]></category>
		<category><![CDATA[Social Security]]></category>

		<guid isPermaLink="false">http://www.blog.bripardun.com/?p=455</guid>
		<description><![CDATA[Social Security Adds 38 New Medical Conditions that  		Qualify for Disability Help


Adding new conditions, like early-onset Alzheimer’s   		disease, will speed benefits to thousands of disabled
Feb. 12, 2010 – The  latest move by the Social  		Security Administration, in an ongoing effort to speed up the decision   		process for consideration [...]]]></description>
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		<slash:comments>0</slash:comments>
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		<item>
		<title>NAC Drug Trial with Brisan and Parker</title>
		<link>http://www.blog.bripardun.com/2009/12/nac-drug-trial-with-brisan-and-parker/</link>
		<comments>http://www.blog.bripardun.com/2009/12/nac-drug-trial-with-brisan-and-parker/#comments</comments>
		<pubDate>Sun, 06 Dec 2009 03:27:23 +0000</pubDate>
		<dc:creator>Dad</dc:creator>
				<category><![CDATA[Brisan]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Niemann-Pick Type C]]></category>
		<category><![CDATA[Parker]]></category>
		<category><![CDATA[Research]]></category>
		<category><![CDATA[Brisan Stults]]></category>
		<category><![CDATA[NAC Drug Trial]]></category>
		<category><![CDATA[NIH]]></category>
		<category><![CDATA[Parker Stults]]></category>

		<guid isPermaLink="false">http://www.blog.bripardun.com/?p=422</guid>
		<description><![CDATA[
Three days was enough time for us to be in Bethesda, MD at the NIH! We were thankful that we didn&#8217;t have to spend all day Thursday &#38; Friday running around with our head cut off!  Last night we had an opportunity to eat dinner with friends from KC that moved to DC for work! [...]]]></description>
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		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Heading to Bethesda, MD to start the NAC Trial for NPC</title>
		<link>http://www.blog.bripardun.com/2009/12/heading-to-bethesda-md-to-start-the-nac-trial-for-npc/</link>
		<comments>http://www.blog.bripardun.com/2009/12/heading-to-bethesda-md-to-start-the-nac-trial-for-npc/#comments</comments>
		<pubDate>Wed, 02 Dec 2009 04:13:42 +0000</pubDate>
		<dc:creator>Dad</dc:creator>
				<category><![CDATA[Brisan]]></category>
		<category><![CDATA[Michael Stults]]></category>
		<category><![CDATA[Mike & Jennifer]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Niemann-Pick Type C]]></category>
		<category><![CDATA[Parker]]></category>
		<category><![CDATA[Biomarker Validation for Niemann-Pick Disease]]></category>
		<category><![CDATA[Jennifer]]></category>
		<category><![CDATA[N-Acetyl Cysteine]]></category>
		<category><![CDATA[NAC Trial]]></category>
		<category><![CDATA[Niemann-Pick Disease Type C]]></category>
		<category><![CDATA[Stults]]></category>
		<category><![CDATA[Type C]]></category>

		<guid isPermaLink="false">http://www.blog.bripardun.com/?p=407</guid>
		<description><![CDATA[Tomorrow morning we set out on a journey across the country to start a new drug trial they call the Biomarker Validation for Niemann-Pick Disease, type C: Safety and Efficacy of N-Acetyl Cysteine at the National Institute of Health in Bethesda, MD. This clinical trial will hopefully lay the groundwork for future therapeutic trials. You can [...]]]></description>
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		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>Crop &amp; Shop Fundraiser &#124; Benefit For Brisan and Parker Stults &#124; Saturday, November 21, 2009</title>
		<link>http://www.blog.bripardun.com/2009/11/crop-shop-fundraiser-benefit-for-brisan-and-parker-stults-saturday-november-21-2009/</link>
		<comments>http://www.blog.bripardun.com/2009/11/crop-shop-fundraiser-benefit-for-brisan-and-parker-stults-saturday-november-21-2009/#comments</comments>
		<pubDate>Thu, 05 Nov 2009 02:22:29 +0000</pubDate>
		<dc:creator>Dad</dc:creator>
				<category><![CDATA[Brisan]]></category>
		<category><![CDATA[Fundraiser]]></category>
		<category><![CDATA[Jenn Stults]]></category>
		<category><![CDATA[Michael]]></category>
		<category><![CDATA[Michael Stults]]></category>
		<category><![CDATA[Mike & Jennifer]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Niemann-Pick Type C]]></category>
		<category><![CDATA[Parker]]></category>
		<category><![CDATA[Updates]]></category>
		<category><![CDATA[Your help is needed]]></category>
		<category><![CDATA[Brisan Stults]]></category>
		<category><![CDATA[Grain Valley]]></category>
		<category><![CDATA[Jennifer Stults]]></category>
		<category><![CDATA[MO]]></category>
		<category><![CDATA[Parker Stults]]></category>
		<category><![CDATA[Stacey Perry]]></category>

		<guid isPermaLink="false">http://www.blog.bripardun.com/?p=369</guid>
		<description><![CDATA[What is Niemann-Pick Type C? Here is something to put it into perspective. &#8220;Dementia is something usually associated with older people. However, children, teenagers and young adults can experience dementia as a result of a number of rare diseases and conditions. Niemann-Pick Disease Type C (NPC) is an example of one of these diseases, and [...]]]></description>
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		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Strength of family endures despite nearly insurmountable odds</title>
		<link>http://www.blog.bripardun.com/2009/10/strength-of-family-endures-despite-nearly-insurmountable-odds/</link>
		<comments>http://www.blog.bripardun.com/2009/10/strength-of-family-endures-despite-nearly-insurmountable-odds/#comments</comments>
		<pubDate>Tue, 06 Oct 2009 21:32:39 +0000</pubDate>
		<dc:creator>Dad</dc:creator>
				<category><![CDATA[Brisan]]></category>
		<category><![CDATA[Fundraiser]]></category>
		<category><![CDATA[Jenn Stults]]></category>
		<category><![CDATA[Michael]]></category>
		<category><![CDATA[Michael Stults]]></category>
		<category><![CDATA[Mike & Jennifer]]></category>
		<category><![CDATA[Mom]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Niemann-Pick Type C]]></category>
		<category><![CDATA[Parker]]></category>
		<category><![CDATA[Your help is needed]]></category>
		<category><![CDATA[Brisan Stults]]></category>
		<category><![CDATA[Christopher Fischer]]></category>
		<category><![CDATA[Grain Valley]]></category>
		<category><![CDATA[Jennifer Stults]]></category>
		<category><![CDATA[MO]]></category>
		<category><![CDATA[Niemann-Pick Typ]]></category>
		<category><![CDATA[NP-C]]></category>
		<category><![CDATA[Parker Stults]]></category>
		<category><![CDATA[The Pointe - Grain Valley]]></category>
		<category><![CDATA[The Pointe Staff]]></category>

		<guid isPermaLink="false">http://www.blog.bripardun.com/?p=356</guid>
		<description><![CDATA[Strength of family endures despite nearly insurmountable odds
Two young brothers suffer from rare disease, sometimes called “Childhood Alzheimer’s”
By Christopher Fischer
The Pointe Staff
Published: Tuesday, October 6, 2009 10:04 AM CDT 
Enter their home, and you’ll see a young, middle class family that appears to be much like any other in Grain Valley. Three young, boisterous boys [...]]]></description>
		<wfw:commentRss>http://www.blog.bripardun.com/2009/10/strength-of-family-endures-despite-nearly-insurmountable-odds/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>H.R. 2866: Improving Access to Clinical Trials Act of 2009</title>
		<link>http://www.blog.bripardun.com/2009/10/h-r-2866-improving-access-to-clinical-trials-act-of-2009/</link>
		<comments>http://www.blog.bripardun.com/2009/10/h-r-2866-improving-access-to-clinical-trials-act-of-2009/#comments</comments>
		<pubDate>Fri, 02 Oct 2009 01:14:55 +0000</pubDate>
		<dc:creator>Dad</dc:creator>
				<category><![CDATA[H.R. 2866]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Niemann-Pick Type C]]></category>
		<category><![CDATA[Social Secuirty]]></category>

		<guid isPermaLink="false">http://www.blog.bripardun.com/?p=326</guid>
		<description><![CDATA[ Current law prevents many people who receive Supplemental Security Income from accepting research compensation because it makes them ineligible to receive government medical benefits. This penalty stops significant numbers of people with rare diseases from participating in clinical studies.
The fear of losing Medicaid coverage is a strong disincentive for Social Security beneficiaries to participate [...]]]></description>
		<wfw:commentRss>http://www.blog.bripardun.com/2009/10/h-r-2866-improving-access-to-clinical-trials-act-of-2009/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Fighting For The Lives Of Children</title>
		<link>http://www.blog.bripardun.com/2009/09/fighting-for-the-lives-of-children/</link>
		<comments>http://www.blog.bripardun.com/2009/09/fighting-for-the-lives-of-children/#comments</comments>
		<pubDate>Thu, 17 Sep 2009 01:46:41 +0000</pubDate>
		<dc:creator>Dad</dc:creator>
				<category><![CDATA[Brisan]]></category>
		<category><![CDATA[Jenn Stults]]></category>
		<category><![CDATA[Michael]]></category>
		<category><![CDATA[Michael Stults]]></category>
		<category><![CDATA[Mike & Jennifer]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Niemann-Pick Type C]]></category>
		<category><![CDATA[Parker]]></category>
		<category><![CDATA[Updates]]></category>

		<guid isPermaLink="false">http://www.blog.bripardun.com/?p=323</guid>
		<description><![CDATA[Three of Cindy and Mike Parseghian’s four children lost their lives to a disease called Niemann-Pick Type C, an extremely rare neurodegenerative syndrome without a cure. At Notre Dame, Kasturi Haldar works at the Center for Rare and Neglected Diseases, searching for a cure for this vicious genetic disorder.
]]></description>
		<wfw:commentRss>http://www.blog.bripardun.com/2009/09/fighting-for-the-lives-of-children/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Congressman Mike Rogers&#8217; opening statement on Health Care reform in Washington D.C.</title>
		<link>http://www.blog.bripardun.com/2009/08/congressman-mike-rogers-opening-statement-on-health-care-reform-in-washington-d-c/</link>
		<comments>http://www.blog.bripardun.com/2009/08/congressman-mike-rogers-opening-statement-on-health-care-reform-in-washington-d-c/#comments</comments>
		<pubDate>Fri, 28 Aug 2009 01:28:09 +0000</pubDate>
		<dc:creator>Dad</dc:creator>
				<category><![CDATA[Brisan]]></category>
		<category><![CDATA[Jenn Stults]]></category>
		<category><![CDATA[Michael Stults]]></category>
		<category><![CDATA[Mike & Jennifer]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Niemann-Pick Type C]]></category>
		<category><![CDATA[Parker]]></category>

		<guid isPermaLink="false">http://www.blog.bripardun.com/?p=318</guid>
		<description><![CDATA[Must See.

]]></description>
		<wfw:commentRss>http://www.blog.bripardun.com/2009/08/congressman-mike-rogers-opening-statement-on-health-care-reform-in-washington-d-c/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Happy 5th Birthday Brisan!</title>
		<link>http://www.blog.bripardun.com/2009/08/happy-5th-birthday-brisan/</link>
		<comments>http://www.blog.bripardun.com/2009/08/happy-5th-birthday-brisan/#comments</comments>
		<pubDate>Fri, 28 Aug 2009 01:25:33 +0000</pubDate>
		<dc:creator>Dad</dc:creator>
				<category><![CDATA[Brisan]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Niemann-Pick Type C]]></category>

		<guid isPermaLink="false">http://www.blog.bripardun.com/?p=316</guid>
		<description><![CDATA[Today is Brisan&#8217;s 5th Birthday!  Happy Birthday Brisan!!!!!!
]]></description>
		<wfw:commentRss>http://www.blog.bripardun.com/2009/08/happy-5th-birthday-brisan/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Budget cuts threaten young girl&#8217;s life-sustaining care</title>
		<link>http://www.blog.bripardun.com/2009/08/budget-cuts-threaten-young-girls-life-sustaining-care/</link>
		<comments>http://www.blog.bripardun.com/2009/08/budget-cuts-threaten-young-girls-life-sustaining-care/#comments</comments>
		<pubDate>Sat, 08 Aug 2009 16:06:09 +0000</pubDate>
		<dc:creator>Dad</dc:creator>
				<category><![CDATA[Brisan]]></category>
		<category><![CDATA[Jenn Stults]]></category>
		<category><![CDATA[Michael Stults]]></category>
		<category><![CDATA[News]]></category>
		<category><![CDATA[Niemann-Pick Type C]]></category>
		<category><![CDATA[Parker]]></category>
		<category><![CDATA[Your help is needed]]></category>

		<guid isPermaLink="false">http://www.blog.bripardun.com/?p=303</guid>
		<description><![CDATA[This story aired on Tuesday!  I was out of town so I didn&#8217;t get to watch it. Hopefully you can see what these challenges lay ahead for Brisan and Parker. Please keep Jessica&#8217;s family and everyone affected by this disease in your prayers.
Embedded video from CNN Video
The story
Anthony and Lisa Leoni have little time [...]]]></description>
		<wfw:commentRss>http://www.blog.bripardun.com/2009/08/budget-cuts-threaten-young-girls-life-sustaining-care/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
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