July 29th, 2006 by 
Jeanette
Bob Hobson, a.k.a. Quackenclutter says, “Happiness is being able to scratch where it itches or giving that well deserved pat on . the back.”
Posted in Marfan sites, Marfan individuals, Includes photo(s), Blogathon, Humor | 
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July 29th, 2006 by Jeanette
Kari sent a .pdf file of the ad the Heart of Iowa Chapter used in the NMF’s 25th anniversary book. It’s got lots of pictures from the chapter, so check it out! You’ll need an Acrobat reader to view it.
heart_o_iowa_ad.pdf
Posted in Fund-raising, Marfan sites, Includes photo(s), Blogathon | No Comments »
August 6th, 2005 by Jeanette
Here’s a photo from a meeting of the Marfan Israel group. They have a website, and the picture was sent to us by Miriam, who’s web site can be found here.
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August 6th, 2005 by Jeanette
What is the Marfan Syndrome? Good question. Here is a brief definition of the Marfan Syndrome from the National Marfan Foundation’s excellent web site.
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The Marfan syndrome is a heritable condition that affects the connective tissue. The primary purpose of connective tissue is to hold the body together and provide a framework for growth and development. In the Marfan syndrome, the connective tissue is defective and does not act as it should. Because connective tissue is found throughout the body, the Marfan syndrome can affect many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin and lungs.
The Marfan syndrome affects men, women and children, and has been found among people of all races and ethnic backgrounds. It is estimated that at least 1 in 5,000 people in the United States have the disorder.
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August 23rd, 2004 by Jeanette
South African Marfan Syndrome Organisation Home. New (or newly discovered) resource on the web. In English and in Afrikaans.
Thanks, Richard!
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July 24th, 2004 by Jeanette
Here is a link to the Marfan Support Group Ireland
Hi over there in Ireland!
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July 24th, 2004 by Jeanette
Information about the Marfan syndrome is Hebrew can be found at Marfan Israel. Here is the page as a picture, so if you don’t have Hebrew installed in your browser, you can see the Hebrew letters.
Miriam writes “We are about 10 people that have Marfan and meet once in a few weeks our goal is to have more people with Marfan so we can have a Marfan clinic in one of the hospital here, I have now about 50 people on my list, so we wrote a leaflet and we give it to nurses doctors and others,
the page is the leaflet.”
Miriam also has her own website here.
Thanks, Miriam!
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