Long, thin fingers typing away Marfan Life 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
News

Tuesday, December 27, 2005

WTOP: Never a face in the crowd [Vincent Schiavelli]

WTOP: Never a face in the crowd: "Some actors work a lifetime to perfect what Vincent Schiavelli could do with a glance.
This wasn't because of his acting ability - though he was a fine actor. Schiavelli had the countenance of a melting clock, the hooded eyes of a serial killer, the smile of someone who might be off his medication.

It was a curse he forged into a career. By the time Schiavelli died yesterday, of lung cancer at age 57, he had starred in 150 television shows and movies, usually as a hit man, a madman or a mad scientist. He [had a] name you couldn't remember with a face you couldn't forget."

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The Rugged Elegance Inspiration Network: Celebrating The Life of Italian American Actor Vincent Schiavelli

The Rugged Elegance Inspiration Network: Celebrating The Life of Italian American Actor Vincent Schiavelli: "His was a face the world recognized on television and the big screen. However, try to name the man who played the ghost in the New York subway who bumped into Patrick Swayze in the movie, Ghost or who took on the role of one of the patients in One Flew Over the Cuckoo's Nest, and anyone not in the U.S. movie business might be hard-pressed to recognize a Sicilian-American actor by the name of Vincent Schiavelli."

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Monday, December 26, 2005

CNN.com - Character actor Vincent Schiavelli dead - Dec 26, 2005

CNN.com - Character actor Vincent Schiavelli dead - Dec 26, 2005 Vincent Schiavelli had the Marfan syndrome and was an honorary co-chair of the National Marfan Foundation. He died from lung cancer.

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These Minnesotans' lives continue to change for better

St. Paul Pioneer Press | 12/26/2005 | These Minnesotans' lives continue to change for better: "Keith Hardy, 42, of St. Paul, kept his marathon promise. After not finishing the Maui Marathon in September, Hardy promised himself never to be 'DNF' — did not finish — again if he could help it. Two weeks later, he crossed the line at the 2006 Twin Cities Marathon, his 43rd marathon. Hardy, a writer/trainer at Ameriprise Financial, has Marfan syndrome, a connective tissue disorder."

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Saturday, December 24, 2005

Casting Call

Casting Call: "“MO” is the true story of a boy growing up with Marfan Syndrome that will be made into a feature-length film. We are currently looking for a kind, charming, soul-filled 15 to 20 year old Caucasian boy with Marfan Syndrome to play the title character. No previous acting experience is required. The film will be shot on the south shore of Long Island, NY in the summer of 2006."

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Fans can relive Mountaineers season, thanks to HS student

Fans can relive Mountaineers season, thanks to HS student: "Kevin Hartmann, a 15-year-old Liberty Street resident [who has the Marfan syndrome], filmed the entire 2005 Vermont Mountaineers season, from opening day to the New England College Baseball League Northern Division Championships, as the three-year-old team played its best season to date."

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Sunday, December 18, 2005

MyWestTexas.com - Local News - 12/18/2005 - Midland couple's daughter named 2005 Distinguished Professional Woman

MyWestTexas.com - Local News - 12/18/2005 - Midland couple's daughter named 2005 Distinguished Professional Woman: "The daughter of a Midland couple was recently named the 2005 Distinguished Professional Woman by the University of Texas Health Science Center at Houston.

Dr. Dianna Milewicz is the daughter of Midlanders Doris and Don McGookey. Milewicz received the award on Dec. 7.

'I think it's an honor to receive an award from your colleagues that you work with and to be recognized for your achievements in science and medicine by the people that know you best,' she said. 'It's really quite an honor.'"

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Saturday, December 17, 2005

Holiday shopping is easy at Henry's Hearts - Portion goes to Marfan

Henry's Hearts: "Buy a gift from the Henry's Hearts collection this holiday season, and you're doing more than just checking a present off your shopping list - you might also be helping to save a life.
Henry's Hearts, a non-profit catalog gift company started by Medfield computer-techie-cum-entrepreneaur Erin Moran McCormick more than a year ago, features chocolate truffles, cookies and other treats, all packaged in festive boxes that make cheerful holiday presents. The company donates a portion of its proceeds toward health organizations and to educating the public about Marfan syndrome, a disorder of the connective tissues that hold the body together. They also send their gifts to Marfan patients and their families, the people who suffer through illness on a daily basis like someone very close to McCormick.

"

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WNDU-TV: Maureen's Medical Moment Story: Marfan 's syndrome - December 12, 2005

WNDU-TV: Maureen's Medical Moment Story: Marfan 's syndrome - December 12, 2005: "Marfan's syndrome: It's a condition many people have never heard of.

However, it has a strong connection to a movie in theaters right now.

The author of the show, Rent, Jonathan Larson, died the night of the play's final dress rehearsal of a torn aneurysm in his chest. The underlying cause: Marfan's syndrome.

It's a cautionary tale Michael Murray knows all too well."

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Make-a-Wish Foundation grants wish for 15-year-old; Dylan Rohrer meets Pres. Bush

Tahoe Daily Tribune - News: "President Bush gave South Shore's Dylan Rohrer a bookmark and pen Friday and thanked the 15-year-old for supporting the nation's troops, fulfilling a two-year-old wish to meet the commander in chief. "

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Wednesday, December 07, 2005

President to meet with South Shore teen

President to meet with South Shore teen: "A Boy Scout and a member of the junior ROTC program, South Tahoe High School sophomore Dylan Rohrer nourishes an intense interest in history and Russia.

His parents, Gwen and Michael Rohrer, describe their 15-year-old son as a true patriot. For that, the couple pledged to give their son a chance to meet his one ideological hero face-to-face."

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