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	<title>Salty and Sweet &#187; cystic fibrosis foundation</title>
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	<link>http://saltyandsweet.org</link>
	<description>Daily life fighting Cystic Fibrosis and Cystic Fibrosis Related Diabetes.</description>
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		<title>I need this treatment. Please help tell the FDA.</title>
		<link>http://saltyandsweet.org/2008/11/21/i-need-this-treatment-please-help-tell-the-fda/</link>
		<comments>http://saltyandsweet.org/2008/11/21/i-need-this-treatment-please-help-tell-the-fda/#comments</comments>
		<pubDate>Fri, 21 Nov 2008 23:15:11 +0000</pubDate>
		<dc:creator>Salty</dc:creator>
				<category><![CDATA[Challenges]]></category>
		<category><![CDATA[Cystic Fibrosis]]></category>
		<category><![CDATA[Support]]></category>
		<category><![CDATA[AZLI]]></category>
		<category><![CDATA[Aztreonam]]></category>
		<category><![CDATA[cff]]></category>
		<category><![CDATA[cystic fibrosis foundation]]></category>
		<category><![CDATA[drug approval]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[lung infection]]></category>
		<category><![CDATA[pseudomonas]]></category>
		<category><![CDATA[pseudomonas aeruginosa]]></category>

		<guid isPermaLink="false">http://saltyandsweet.org/?p=393</guid>
		<description><![CDATA[I find this extremely important.  I received this email (see below) and excuse me for just copy and pasting, but the Cystic Fibrosis Foundation, and myself, and others with CF, need your help.
Personally, I am waiting with baited breath for this treatment to hit the market.  Inhaled Aztreonam, AZLI, was expected to be available this [...]]]></description>
			<content:encoded><![CDATA[<p>I find this extremely important.  I received this email (see below) and excuse me for just copy and pasting, but the Cystic Fibrosis Foundation, and myself, and others with CF, need your help.</p>
<p>Personally, I am waiting with baited breath for this treatment to hit the market.  Inhaled Aztreonam, AZLI, was expected to be available this past September.  My doc already had plans to put me on it. Due to some changes of FDA board members, this drug is now having to be restudied which means it probably will not hit the market for another two years&#8230; a wait too long for some of us.  We are asking for your help in supporting the reconsideration of the application already submitted to the FDA in approving this drug.</p>
<p>I have not yet used AZLI&#8230; yet.  But Aztreonam is one of the most effective IV antibiotics I use. Having this drug available in inhaled form could add years to my life.  I have cultured <a href="http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa" target="_blank">Pseudomonas Aeruginosa</a> for many years (and sometimes many straigns of it).  Having this drug gives me one more weapon against this very harmful bug.</p>
<p>Pseudomonas not only causes horrid infections, it also causes severe irreversible lung damage.  Aztreonam is used as common practice in fighting PA, but right now it is only available via IV.  Having this drug applied directly to the problem, via inhalation, would only make the fight against PA easier and more successful.</p>
<p>Since Aztreonam is only currently available via IV, I only receive it when I am really sick. This inhaled version would be dosed three times a day, 28 days on, 28 days off.  Which basically means I would be fighting my PA with Aztreonam every other month rather than the once to four times per year when I do IVs.  Couple that with the Tobi, inhaled Tobramycin, which I would do on the off months and I would be continuously fighting this evil PA.  I bet that my frequency of hospitalizations would go down given the extra boost I would get from the drug.  Oh my! What life would be like?!!!</p>
<p>Please consider writing the FDA in support of this new drug.<br />
<span style="font-size: x-small; font-family: Arial;"><span style="text-decoration: underline;"><a rel="nofollow" href="http://capwiz.com/cff/utr/1/AQNDJLXXXL/DGQCJLXZZY/2644755141" target="_blank">Read additional information about AZLI and the importance of the drug for treating CF.</a></span></span></p>
<p><span style="font-size: x-small; font-family: arial,helvetica;"> </span></p>
<p><span style="font-size: x-small; font-family: arial,helvetica;"> Cystic Fibrosis 	<!-- .salutation { font-family:Verdana, Arial, Helvetica, sans-serif;font-size:12px;color:#CB623E;font-weight:bold;} .body_text { font-family:Verdana, Arial, Helvetica, sans-serif;font-size:12px;color:#000000;} .style1 {font-size:12px;color:#CB623E;font-family:Verdana, Arial, Helvetica, sans-serif;} --></span></p>
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<td><a rel="nofollow" href="http://capwiz.com/cff/utr/1/AQNDJLXXXL/BUQTJLXZZV/2644755141" target="_blank"><img src="http://images.cff.org/Mastimages/20061009/CFF_mastheadC.jpg" border="0" alt="We are making a difference in the fight against cystic fibrosis." width="599" height="253" /></a></td>
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<td colspan="4" valign="top"><span class="body_text"> <span style="font-size: x-small; font-family: Arial;"> Dear Advocate, </span><span style="font-size: x-small; font-family: Arial;"> <strong> Have you or someone you know had a personal experience using</strong></span></span><span style="font-size: x-small; font-family: Arial;"><strong><br />
<span style="text-decoration: underline;"><a rel="nofollow" href="http://capwiz.com/cff/utr/1/AQNDJLXXXL/KLLHJLXZZW/2644755141" target="_blank">Aztreonam Lysine for Inhalation </a> </span> (AZLI)? </strong> </span></p>
<p><span style="font-size: x-small; font-family: Arial;"> AZLI is a promising new inhaled antibiotic treatment that appears to help combat the<br />
pulmonary symptoms of cystic fibrosis. </span></p>
<p><span style="font-size: x-small; font-family: Arial;"> By sharing your experience using AZLI, you can help the Foundation as it works with the<br />
Food and Drug Administration (FDA) to move this new therapy forward. </span></p>
<p><span style="font-size: x-small; font-family: Arial;"> To help, simply: </span></p>
<ul><span style="font-size: x-small; font-family: Arial;"></p>
<li> <strong> Read </strong> our 		<span style="text-decoration: underline;"> <a rel="nofollow" href="http://capwiz.com/cff/utr/1/AQNDJLXXXL/FNTMJLXZZX/2644755141" target="_blank"> sample letter </a> </span></li>
<li> <strong> Write </strong> about what AZLI has done for you</li>
<li> <strong> E-mail </strong> your letter to 		<a rel="nofollow" href="mailto:publicpolicy@cff.org" target="_blank"> publicpolicy@cff.org </a> by 	    <strong> November 28, 2008. </strong></li>
<p></span></ul>
<p><span style="font-size: x-small; font-family: Arial;"> <span style="text-decoration: underline;"> <a rel="nofollow" href="http://capwiz.com/cff/utr/1/AQNDJLXXXL/DGQCJLXZZY/2644755141" target="_blank"> Read additional information about AZLI and the importance of the drug for treating CF. </a> </span> </span></p>
<p><span style="font-size: x-small; font-family: Arial;">Thank you for helping us work with the FDA to advance vital new treatments for cystic fibrosis. </span></p>
<p><span style="font-size: x-small; font-family: Arial;"> Cystic Fibrosis Foundation<br />
6931 Arlington Road<br />
Bethesda, MD 20814<br />
(800) FIGHT CF<br />
E-mail: <a rel="nofollow" href="mailto:publicpolicy@cff.org" target="_blank">publicpolicy@cff.org</a><br />
Web: <a rel="nofollow" href="http://capwiz.com/cff/utr/1/AQNDJLXXXL/BXYIJLXZZZ/2644755141" target="_blank">www.cff.org/GetInvolved/Advocate</a><br />
</span></p>
<p><span style="font-size: x-small; font-family: Arial;"> <strong> P.S. Please forward this email to anyone who might be interested<br />
in sharing their story about using ALZI. </strong> </span></td>
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<td>&#8212;&#8212;&#8212;&#8212;&#8212;&#8212;&#8212;&#8212;-</p>
<p><span style="font-size: x-small; font-family: Arial;"> The CF Foundation is a donor-supported, nonprofit organization committed to controlling</span><span style="font-size: x-small; font-family: Arial;"> and curing<br />
cystic fibrosis,  	a life-threatening genetic disease, and to improving the quality of life for those with CF.<br />
To learn more about the Foundation, visit  		<a rel="nofollow" href="http://www.cff.org/" target="_blank"> www.cff.org. </a>and <a rel="nofollow" href="http://capwiz.com/cff/utr/1/AQNDJLXXXL/GQYPJLYAAA/2644755141" target="_blank"> subscribe </a>to receive information by e-mail. </span></td>
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<p>________________________________________________________</p>
<p>P.S.  Thank you.  ~salty.</p>
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		<title>Awareness</title>
		<link>http://saltyandsweet.org/2008/05/01/awareness/</link>
		<comments>http://saltyandsweet.org/2008/05/01/awareness/#comments</comments>
		<pubDate>Thu, 01 May 2008 13:29:38 +0000</pubDate>
		<dc:creator>Salty</dc:creator>
				<category><![CDATA[Challenges]]></category>
		<category><![CDATA[Cystic Fibrosis]]></category>
		<category><![CDATA[Life in General]]></category>
		<category><![CDATA[Support]]></category>
		<category><![CDATA[awareness]]></category>
		<category><![CDATA[cff]]></category>
		<category><![CDATA[cystic fibrosis awareness]]></category>
		<category><![CDATA[cystic fibrosis foundation]]></category>
		<category><![CDATA[great strides]]></category>

		<guid isPermaLink="false">http://saltyandsweet.wordpress.com/?p=208</guid>
		<description><![CDATA[
Happy May!  Congress has officially named MAY Cystic Fibrosis Awareness month. Yippee!!
So this month maybe you can do one of more of these things:
* Send out a mass email sending people to this site to show them what life is like for someone with Cystic Fibrosis.
* Participate in the national Great Strides walks happening [...]]]></description>
			<content:encoded><![CDATA[<p style="text-align:center;"><a title="CF Awareness Month Resolution" href="http://www.cfawareness.org/Resolution298.htm" target="_blank"><img class="size-medium wp-image-209" src="http://saltyandsweet.org/wp-content/uploads/2008/05/purple_awareness_ribbon.gif?w=150" alt="Purple CF Awareness" width="150" height="150" /></a></p>
<p>Happy May!  Congress has officially named MAY Cystic Fibrosis Awareness month. Yippee!!<br />
So this month maybe you can do one of more of these things:</p>
<p>* Send out a mass email sending people to this site to show them what life is like for someone with Cystic Fibrosis.</p>
<p>* Participate in the national Great Strides walks happening in your area (www.cff.org/greatstrides for more info).  [Note:  The Cystic Fibrosis Foundation (CFF) is a GREAT source of large scale funding for research and education of Cystic Fibrosis]</p>
<p>* Buy a <a href="http://www.printfection.com/saltyandsweet" target="_blank">Salty and Sweet t-shirt</a>, wear it every day this month with pride and if someone asks about it tell them about CF&#8230; you can wash it if you&#8217;d like&#8230; <img src='http://saltyandsweet.org/wp-includes/images/smilies/icon_smile.gif' alt=':)' class='wp-smiley' /> </p>
<p>* Tell someone with CF that you love them!!</p>
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