MarfanLife.net | News blog

Matchmakers on Fox Chicago
For some people., Valentine’s Day is filled with sweet candy and beautiful flowers.For others–nothing but wilting memories of romance gone sour.

<em>I know at least one Marfan individual and one Loeys-Dietz individual featured in the Tall Club segment.</em>

Sunderland Today News - Special day in tribute to tragic Liam
DEVOTED family and friends of a young Sunderland fan who died from a rare condition will gather tomorrow to remember him.

Broken Hearts - Nevada Appeal Brian and Kristi Rasmussen’s problems run deeper than anything a skilled surgeon can fix. Both are afflicted with heart disease, which has put them through six surgeries. They fell in love almost 10 years ago, and married on a hot August day. Since then, they’ve been struggling to get by, jumping from home to home and job to job. Every day brings uncertainty. Their one hope: A better life for their two children.

Named after Antoine Marfan, the French pediatrician who first described it in 1896, “Marfan syndrome†is a genetic disorder of the body’s connective tissue. February is National Marfan Syndrome Awareness month.

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For the up to an estimated 200,000 Americans who currently have been diagnosed with the disease, there is no known cure. But according to Lexington resident Suzanne Kouri, president of the Massachusetts Chapter of the National Marfan Foundation, “There has been an upsurge in research in recent years, including a new ongoing study at Children’s Hospital in Boston, and much more work has been done to alleviate the symptoms.â€

Marfan what? Life with Marfan Syndrome > General News > Stories > Denver > YourHub.com
inding myself single at the age of 55, I became romantically interested in a female co-worker and friend of several years. After we dated awhile it became obvious that we were going to spend our lives together. She said that there was something you must know before committing; she said “I have Marfan Syndrome.” At that moment I didn’t have a clue what “Marfans” was or the impact it might have on her life and the life of her loved ones.

Coroner: U. T. Basketball Player Suffered from Marfan’s Syndrome
(Toledo, OH) — The Lucas County Coroner said Thursday that a University of Toledo basketball player who collapsed and died during practice in October 2006, had genetic defect in the aorata.

Hampton Union Community News: A balancing act
Sara Gangai of Hampton has something in common with Abraham Lincoln, the composer Rachmaninoff and Mary Queen of Scots. Gangai has a genetic disorder called Marfan syndrome.

Welcome To The Tony B Fund
Tony has recently undergone emergencyheart surgery to replace his ascending aorta. He had been working in construction and was not offered health insurance, hence his extreme medical expenses are not covered. Therefore, he could use all the help he can get right now. Although Tony has not publicized his personal ordeal, we feel it’s important to make others aware of his situation.

[I found this website while surfing My Space. Thought people might want to check it out. -Jeanette]

Surgery helps family fight heart defects
Jenifer Vasquez-Aguirre, 20, stands 6 feet tall and has long fingers and a long torso. Her chest bears freshly-healed scars.

All are marks of Marfan syndrome, an incurable genetic disorder that took her father’s life when he was 21, required heart surgery for a brother and sent her to St. Joseph’s Hospital and Medical Center in Phoenix last month with severe chest pains and breathing difficulties.

Couple honored for work with Marfan foundation
Barbara and Steve Hawthorne, of Freehold, were honored by the National Marfan Foundation (NMF) with a Silver Service award for their contributions to the Marfan community. The Silver Service awards are part of the NMF’s 25th anniversary celebration. These recognitions for 18 NMF members were based on nomination by their peers for outstanding volunteer service.