Long, thin fingers typing away Marfan Life | Marfan Blog Long, thin fingers typing away

Symptoms: Tall, thin stature ~ Long fingers ~ Unusually long arms and legs ~ Curvature of the spine
Chest bone that curves inward or outward ~ Flat feet or high arches ~ Nearsightedness
Weakening of the connective tissue, most dangerously of the aorta
Marfan Blog
(news stories, events, newly discovered links)

Friday, August 06, 2004

TAL SAVES HIS OWN LIFE WITH INVENTION

TAL SAVES HIS OWN LIFE WITH INVENTION A Cheltenham man diagnosed with a potentially fatal heart condition has developed the high-tech device that could ultimately save his life.

Although he had no experience in the medical field he enlisted the help of some of the country's top cardiac experts, set up his own company and attracted Ј200,000 in funding for the project.

The result was the development of a tiny stent that was implanted into his aorta 10 weeks ago at the Royal Brompton Hospital in London.


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Wednesday, August 04, 2004

CBS5.com - Taking Care of Kids' Cardiac Health

CBS5.com - Taking Care of Kids' Cardiac Health: "Pediatric cardiologist Amy Sehnert of UCSF said, 'A third of the time, sudden athlete deaths are due to cardio myopathy, 80 percent which are genetic.' In addition to cardio myopathy, Marfan syndrome and long qt syndrome can also cause sudden death. The majority of these cases are genetic."

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Tuesday, August 03, 2004

Julie Kurnitz, 61, singer/actress got start in Village

Julie Kurnitz, 61, singer/actress got start in Village: "Julie Kurnitz, a Village resident for 40 years and a singer/actress who performed at the Judson Poets Theatre in the 1960s, in cabarets and in Woody Allen's film "Radio Days," died July 15 at New York Hospital at the age of 61."

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Monday, August 02, 2004

In search of a cure: Mother raises money for Marfan syndrome - Lexington Minuteman - Local News

In search of a cure: Mother raises money for Marfan syndrome: "When Yamil Kouri was born, he weighed more than 9 pounds and measured 22 inches long. While he was a big baby, it didn't seem unusual considering his mother Suzanne is 5 feet 11 inches tall, and his father Yamil is 6 feet tall. "
Thanks, Jean!


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Sunday, August 01, 2004

Event looks at concerns in genetics

Event looks at concerns in genetics: FORT WORTH - A cross section of laypeople, physicians, scientists and theologians gathered Saturday to determine whether they can help establish a line that people using reproductive genetic information should not cross.

They failed to arrive at a consensus.


"'What was missing from this forum is how little we know about genetics,' Simpson told participants. 'And because we know so little, regulation remains elusive. There are about 30,000 genes that we've identified, and we know what about 200 of those do. We have a vague idea what 2,500 or so do and have no earthly idea what the others do.'"


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For medical information about the Marfan syndrome that has been approved by the Professional Advisory Board of the National Marfan Foundation, see the NMF website.
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