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<title mode="escaped" type="text/html">Marfan Life | Marfan Blog  </title>
<tagline mode="escaped" type="text/html">Things of interest to those &#13;
of us with the Marfan syndrome</tagline>
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<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108707055187386828" rel="service.edit" title="Mutant human stem cell lines created " type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-12T16:02:31-04:00</issued>
<modified>2004-06-12T20:02:31Z</modified>
<created>2004-06-12T20:02:31Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/mutant-human-stem-cell-lines-created.html" rel="alternate" title="Mutant human stem cell lines created " type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108707055187386828</id>
<title mode="escaped" type="text/html">Mutant human stem cell lines created </title>
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<a href="http://www.axisoflogic.com/artman/publish/article_8902.shtml">AxisofLogic/ Mutant human stem cell lines created 
<br/>
</a>: "'This is a significant advance for the field,' says Leonard Zon, president of the International Society for Stem Cell Research (ISSCR), speaking to Associated Press. 'We may learn a lot about the biology of basic diseases by having those lines available.'"  ...  "The flawed ESC lines developed also include mutations that cause Marfan syndrome, myotonic dystrophy, neurofibromatosis type 1, Fragile X syndrome and Fanconi anaemia." </div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108703782367372665" rel="service.edit" title="Pierce family gains support" type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-12T06:57:03-04:00</issued>
<modified>2004-06-12T10:57:03Z</modified>
<created>2004-06-12T10:57:03Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/pierce-family-gains-support.html" rel="alternate" title="Pierce family gains support" type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108703782367372665</id>
<title mode="escaped" type="text/html">Pierce family gains support</title>
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<a href="http://www.sptimes.com/2004/06/12/Sports/Pierce_family_gains_s.shtml">Sports: Pierce family gains support</a>: "FSU gives aid, condolences to the family of basketball player Ronalda Pierce."</div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108694667714898294" rel="service.edit" title="Tallahassee Democrat | 06/11/2004 | Web site pays tribute to Pierce" type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-11T05:37:57-04:00</issued>
<modified>2004-06-11T09:37:57Z</modified>
<created>2004-06-11T09:37:57Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/tallahassee-democrat-06112004-web-site.html" rel="alternate" title="Tallahassee Democrat | 06/11/2004 | Web site pays tribute to Pierce" type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108694667714898294</id>
<title mode="escaped" type="text/html">Tallahassee Democrat | 06/11/2004 | Web site pays tribute to Pierce</title>
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<a href="http://www.tallahassee.com/mld/democrat/8894599.htm">Tallahassee Democrat | 06/11/2004 | Web site pays tribute to Pierce</a>: "Condolences from around the country have flooded into Florida State's athletic Web site following the death of basketball player Ronalda Pierce."  <a href="http://seminoles.collegesports.com/sports/w-baskbl/spec-rel/Pierce-tribute-index.html">A Tribute to #55 Ronalda Pierce</a>
</div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108692075721247178" rel="service.edit" title="Tallahassee Democrat | 06/09/2004 | Sports can aggravate Marfan syndrome" type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-10T22:25:57-04:00</issued>
<modified>2004-06-11T02:25:57Z</modified>
<created>2004-06-11T02:25:57Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/tallahassee-democrat-06092004-sports.html" rel="alternate" title="Tallahassee Democrat | 06/09/2004 | Sports can aggravate Marfan syndrome" type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108692075721247178</id>
<title mode="escaped" type="text/html">Tallahassee Democrat | 06/09/2004 | Sports can aggravate Marfan syndrome</title>
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<a href="http://www.tallahassee.com/mld/tallahassee/sports/8874847.htm">Tallahassee Democrat | 06/09/2004 | Sports can aggravate Marfan syndrome</a>: "People diagnosed with Marfan syndrome are advised to make changes in their lifestyle.
<br/>Refraining from vigorous sports is at the top of the list."</div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108683895953193719" rel="service.edit" title="Marfan syndrome may have led to player's death" type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-09T23:42:39-04:00</issued>
<modified>2004-06-10T03:42:39Z</modified>
<created>2004-06-10T03:42:39Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/marfan-syndrome-may-have-led-to.html" rel="alternate" title="Marfan syndrome may have led to player's death" type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108683895953193719</id>
<title mode="escaped" type="text/html">Marfan syndrome may have led to player's death</title>
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<a href="http://www.palmbeachpost.com/sports/content/auto/epaper/editions/thursday/sports_047cfa5476ef22b50032.html">Marfan syndrome may have led to player's death</a>: "Florida State University did not test Ronalda Pierce for Marfan syndrome, a genetic disorder coroners suspect might have led to her death, a university official said Wednesday. 
<br/>FSU athletic spokesman Rob Wilson said he was restricted by privacy regulations from discussiong Pierce's medical records, but he could confirm she was not tested for Marfan while at the university."</div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108677678827475397" rel="service.edit" title="Tallahassee Democrat | 06/09/2004 | FSU basketball player dies" type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-09T06:26:28-04:00</issued>
<modified>2004-06-09T10:26:28Z</modified>
<created>2004-06-09T10:26:28Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/tallahassee-democrat-06092004-fsu.html" rel="alternate" title="Tallahassee Democrat | 06/09/2004 | FSU basketball player dies" type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108677678827475397</id>
<title mode="escaped" type="text/html">Tallahassee Democrat | 06/09/2004 | FSU basketball player dies</title>
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<a href="http://www.tallahassee.com/mld/tallahassee/sports/8874828.htm">Tallahassee Democrat | 06/09/2004 | FSU basketball player dies</a>: "Parade magazine named Pierce a third-team All-American after her senior season at Turner County High School in Ashburn, Ga., where she rewrote the school's record book and had her No.55 retired. She played 29 games off the bench last season at FSU, averaging 5.3 points and 3.5 rebounds.
<br/>'She was a soft-spoken kid with a big heart,' said Lauren Bradley, who was a senior on last season's team. 'She would do anything for anybody, and she was really willing to learn. You could just see her grow so tremendously as a person and as a player."  ...   
<br/>
<br/>"People with Marfan syndrome are advised to avoid physical sports, including basketball, as well as any strenuous activities that can potentially place stress on the aorta.
<br/>
<br/>"'I can confirm to you we do not test for Marfan syndrome,' FSU spokesman Rob Wilson said.
<br/>
<br/>"An echocardiogram, which uses sound waves to produce an image of the heart, and a slit-lamp examination of the eyes are often used to assist in the diagnosis. But Eileen Masciale, director of communications for the National Marfan Foundation in Port Washington, N.Y., said physicians need to be able to first see the big picture.
<br/>
<br/>"'There's no simple test,' Masciale said. 'It takes a physician who's going to see the whole person - or an ophthalmologist who sees somebody has a dislocated lens and knows that that's the hallmark of only a couple things.'"
<br/>
<br/>
</div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108677650070569615" rel="service.edit" title="Sports: FSU basketball freshman dies" type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-09T06:21:40-04:00</issued>
<modified>2004-06-09T10:21:40Z</modified>
<created>2004-06-09T10:21:40Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/sports-fsu-basketball-freshman-dies.html" rel="alternate" title="Sports: FSU basketball freshman dies" type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108677650070569615</id>
<title mode="escaped" type="text/html">Sports: FSU basketball freshman dies</title>
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<a href="http://www.sptimes.com/2004/06/09/Sports/FSU_basketball_freshm.shtml">Sports: FSU basketball freshman dies</a>: "Police found no indications of foul play and medical examiner Stephen Sarbeck said an aneurysm ruptured [Ronalda Pierce's] aorta, the large blood vessel that carries blood away from the heart. The police investigation will remain open until a final report is issued from the coroner's office.
<br/>'It could be Marfan or a Marfan-like (condition), but it could be other things, too,' Sarbeck said. 'We have to rule out other conditions with other testing - toxicology, tissue studies, microscopic studies. It's going to take four to six weeks.'"</div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108677628094296108" rel="service.edit" title="Sports can aggravate Marfan syndrome" type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-09T06:18:00-04:00</issued>
<modified>2004-06-09T10:18:00Z</modified>
<created>2004-06-09T10:18:00Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/sports-can-aggravate-marfan-syndrome.html" rel="alternate" title="Sports can aggravate Marfan syndrome" type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108677628094296108</id>
<title mode="escaped" type="text/html">Sports can aggravate Marfan syndrome</title>
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<div xmlns="http://www.w3.org/1999/xhtml">
<a href="http://www.tallahassee.com/mld/tallahassee/sports/8874847.htm">Tallahassee Democrat | 06/09/2004 | Sports can aggravate Marfan syndrome</a>: "People diagnosed with Marfan syndrome are advised to make changes in their lifestyle.
<br/>Refraining from vigorous sports is at the top of the list.
<br/>'With your heart rate up and your blood pressure up as you work harder, the blood pumps harder,' said Eileen Masciale, director of communications for the National Marfan Foundation. 'And with the aorta, the wall is weak in Marfan syndrome. You don't want the constant pounding of the blood in there because that would just enlarge the aorta to the point where it could tear or rupture.'"</div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108674965176537968" rel="service.edit" title="FSU women's basketball player, 19, dies - (United Press International)" type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-08T22:54:30-04:00</issued>
<modified>2004-06-09T02:57:30Z</modified>
<created>2004-06-09T02:54:11Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/fsu-womens-basketball-player-19-dies.html" rel="alternate" title="FSU women's basketball player, 19, dies - (United Press International)" type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108674965176537968</id>
<title mode="escaped" type="text/html">FSU women's basketball player, 19, dies - (United Press International)</title>
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<div xmlns="http://www.w3.org/1999/xhtml">
<a href="http://washingtontimes.com/upi-breaking/20040608-014207-2969r.htm">FSU women's basketball player, 19, dies - (United Press International)</a>: "'Words cannot begin to express the loss we feel,' said FSU Coach Sue Semrau. 'Ronalda was a very special person and although she was with us for such a short time, she enriched our lives in many ways.'"
<br/>
<i>Links to more articles are below</i>
</div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108674658661256853" rel="service.edit" title="AHA publishes statement on exercise and those with congenital heart defects " type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-08T22:03:06-04:00</issued>
<modified>2004-06-09T02:03:06Z</modified>
<created>2004-06-09T02:03:06Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/aha-publishes-statement-on-exercise.html" rel="alternate" title="AHA publishes statement on exercise and those with congenital heart defects " type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108674658661256853</id>
<title mode="escaped" type="text/html">AHA publishes statement on exercise and those with congenital heart defects </title>
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<div xmlns="http://www.w3.org/1999/xhtml">
<a href="http://www.ajc.com/health/content/shared-auto/healthnews/cora/519376.html">The Right Workout for Those With Congenital Heart Defects</a>: "Children, teens and young adults with genetic heart disease can exercise recreationally but need to get advice from their doctors about the kinds of physical activity that are safe, a new American Heart Association scientific statement recommends.
<br/>
<br/>The statement, published in the June 7 issue of Circulation, is meant to help doctors counsel patients who have an increased risk for sudden death while they're doing physical activity.
<br/>This includes people with a number of kinds of genetic heart disease such as: hypertrophic cardiomyopathy; arrhythmogenic right ventricular cardiomyopathy; Marfan syndrome; and ion channel diseases, including long QT syndrome, Brugada syndrome and catecholaminergic polymorphic ventricular tachycardia."</div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108673713750876280" rel="service.edit" title="Florida State University basketball player Ronalda Pierce dies" type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-08T19:05:15-04:00</issued>
<modified>2004-06-12T00:01:15Z</modified>
<created>2004-06-08T23:25:37Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/florida-state-university-basketball.html" rel="alternate" title="Florida State University basketball player Ronalda Pierce dies" type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108673713750876280</id>
<title mode="escaped" type="text/html">Florida State University basketball player Ronalda Pierce dies</title>
<content type="application/xhtml+xml" xml:base="http://www.marfanlife.org/index.html" xml:lang="en-US" xml:space="preserve">
<div xmlns="http://www.w3.org/1999/xhtml">Here are links to a few more stories about Ronalda Pierce's death.  She was just 19 years old.
<br/>From the Tallahassee Democrat <a href="http://www.tallahassee.com/mld/democrat/news/breaking_news/8871222.htm">FSU women's basketball player dies</a>
<br/>
<br/>North County (Calif.) Times <a href="http://www.nctimes.com/articles/2004/06/08/ap/Sports/d8331jp02.txt">Fla. St. Athlete Dies From Aneurysm</a>
<br/>
<br/>Florida State University's Seminoles <a href="http://seminoles.collegesports.com/sports/w-baskbl/spec-rel/060804aaa.html">FSU Women's Basketball Player Ronalda Pierce Passes Away</a>
<br/>
<br/>Florida's Treasure Coast Palm <a href="http://www.tcpalm.com/tcp/home/article/0,1651,TCP_996_2948151,00.html">Florida State women's basketball player found dead in apartment</a> 
<br/>
<br/>SI.com Sports Illustrated <a href="http://sportsillustrated.cnn.com/2004/basketball/ncaa/06/08/floridast.died.ap/">Florida St.'s Pierce dies of apparent aneurysm</a>
<br/>
</div>
</content>
</entry>
<entry>
<link href="http://web.archive.org/web/20040613144708/http://www.blogger.com/atom/5098250/108673188547728694" rel="service.edit" title="Fla. St. Athlete Dies From Aneurysm (phillyBurbs.com)" type="application/x.atom+xml"/>
<author>
<name>Jeanette</name>
</author>
<issued>2004-06-08T17:58:05-04:00</issued>
<modified>2004-06-08T21:58:05Z</modified>
<created>2004-06-08T21:58:05Z</created>
<link href="http://web.archive.org/web/20040613144708/http://www.marfanlife.org/2004/06/fla-st-athlete-dies-from-aneurysm.html" rel="alternate" title="Fla. St. Athlete Dies From Aneurysm (phillyBurbs.com)" type="text/html"/>
<id>tag:blogger.com,1999:blog-5098250.post-108673188547728694</id>
<title mode="escaped" type="text/html">Fla. St. Athlete Dies From Aneurysm (phillyBurbs.com)</title>
<content type="application/xhtml+xml" xml:base="http://www.marfanlife.org/index.html" xml:lang="en-US" xml:space="preserve">
<div xmlns="http://www.w3.org/1999/xhtml">
<a href="http://www.phillyburbs.com/pb-dyn/news/61-06082004-313359.html">Fla. St. Athlete Dies From Aneurysm (phillyBurbs.com)</a>  Florida State basketball player Ronalda Pierce died early Tuesday, apparently from an aneurysm that may have resulted from a genetic disease that typically affects tall people.
<br/>
</div>
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