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	<title>MarbleRoad's Blog: Rare Diseases and Disorders; Public Health; and National Service</title>
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		<title>50/50 and Neurofibrosarcoma</title>
		<link>http://marbleroad.wordpress.com/2011/10/17/5050/</link>
		<comments>http://marbleroad.wordpress.com/2011/10/17/5050/#comments</comments>
		<pubDate>Tue, 18 Oct 2011 02:54:37 +0000</pubDate>
		<dc:creator>marbleroad</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[marbleroad]]></category>
		<category><![CDATA[sarcoma]]></category>
		<category><![CDATA[cancer]]></category>
		<category><![CDATA[tumor]]></category>
		<category><![CDATA[rare disease]]></category>
		<category><![CDATA[rare disorder]]></category>
		<category><![CDATA[howard liebers]]></category>
		<category><![CDATA[50/50]]></category>
		<category><![CDATA[Seth Rogen]]></category>
		<category><![CDATA[Joseph Gordon-Levitt]]></category>
		<category><![CDATA[Will Reiser]]></category>
		<category><![CDATA[neurofibrosarcoma]]></category>
		<category><![CDATA[rare cancer]]></category>
		<category><![CDATA[alcl]]></category>
		<category><![CDATA[anaplastic large-cell lymphoma]]></category>
		<category><![CDATA[non-hodgkin's]]></category>
		<category><![CDATA[17p chromosome]]></category>
		<category><![CDATA[neurofibromatosis]]></category>
		<category><![CDATA[children's tumor foundation]]></category>
		<category><![CDATA[neurofibromatoses]]></category>

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		<description><![CDATA[50/50, a film starring Seth Rogen and Joseph Gordon-Levitt based on the true story of Will Reiser who is a survivor from a battle against a rare cancer of the spine. // The Children's Tumor Foundation seeks to improve the health and well being of individuals and families affected by the neurofibromatoses (NF).<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=marbleroad.wordpress.com&amp;blog=7424178&amp;post=507&amp;subd=marbleroad&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>Saturday night I finally got to my local movie theater to see <a href="http://www.50-50themovie.com/" target="_blank">50/50</a>, a film starring Seth Rogen and Joseph Gordon-Levitt based on the true story of Will Reiser (Producer Red State Diaries, Da Ali G Show), who wrote the film.</p>
<blockquote><p><em>**50/50 is the story of a guy’s transformative and, yes, sometimes funny journey to health – drawing its emotional core from Will Reiser’s own experience with cancer and reminding us that friendship and love, no matter what bizarre turns they take, are the greatest healers.</em></p></blockquote>
<span style="text-align:center; display: block;"><a href="http://marbleroad.wordpress.com/2011/10/17/5050/"><img src="http://img.youtube.com/vi/pVObFYOU9rE/2.jpg" alt="" /></a></span>
<p><strong>Read a piece Will Reiser posted last month in <a href="http://www.esquire.com/features/movies/50-50-movie-cancer-1011" target="_blank">Esquire</a>, “How To Be Really, Really Sick: Advice and affirmations on living with illness from the cancer survivor.”</strong></p>
<p>Will Reiser was diagnosed with a rare form of spinal cancer at 25, when doctors discovered a cancerous tumor crawling along Reiser’s spinal column. I found this film incredibly moving because it recalled memories of my friend Craig Nolan, who in 2005 lost his battle with anaplastic large-cell lymphoma (ALCL), a rare, aggressive form of non-Hodgkin’s lymphoma that arises from T-cells (the reason I set out to create <a href="http://www.marbleroad.org" target="_blank">MarbleRoad</a>).</p>
<p>In the film, Adam (played by Joseph Gordon-Levitt) is diagnosed with a malignant peripheral nerve sheath tumor, aka “malignant schwannoma” or “neurofibrosarcoma”.</p>
<p><em>Listen to <a href="http://www.npr.org/2011/09/28/140808566/gordon-levitt-reiser-tackle-50-50-odds" target="_blank">this interview</a> with Will Reiser from Fresh Air on NPR (while noting that the characters of Seth and Joseph are actually employees at a public radio station); and go see <a href="http://www.imdb.com/title/tt1306980/" target="_blank">this movie</a>.</em></p>
<p>Soft tissue sarcomas are very rare, and represent only about 1% of all cancers diagnosed each year. Neurofibrosarcomas are particularly rare, as they comprise only about 6% of that 1%; and are particularly interesting in a clinical sense because they are caused by a mutation on a tumor suppressor gene (p53) on the 17p chromosome. About half the cases are diagnosed in people with neurofibromatosis; a genetically-inherited disorder in which the nerve tissue grows tumors (i.e., neurofibromas) that may be benign or may cause serious damage by compressing nerves and other tissues.</p>
<p>If you have some time, head over to the Children’s Tumor Foundation <a href="http://www.ctf.org/" target="_blank">website</a>. The Children&#8217;s Tumor Foundation is a non-profit 501(c)(3) medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF).</p>
<p>The mission of The Children&#8217;s Tumor Foundation is to:</p>
<p style="padding-left:30px;"><em>• Encourage and support research and the development of treatments and cures for neurofibromatosis types 1 and 2, schwannomatosis and related disorders;</em><br />
<em> • Support persons with NF, their families and caregivers by providing thorough, accurate, current and readily accessible information;</em><br />
<em> • Assist in the development of clinical centers, best practices, and other patient support mechanisms (but not including direct medical care) to create better access to quality healthcare for affected individuals; and,</em><br />
<em> • Expand public awareness of NF to promote earlier and accurate diagnoses by the medical community, increase the non-affected population&#8217;s understanding of the challenges facing persons with NF, and encourage financial and other forms of support from public and private sources.</em></p>
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