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
WTOP: Never a face in the crowd [Vincent Schiavelli] Posted by Jeanette at
12:46 PM 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."
The Rugged Elegance Inspiration Network: Celebrating The Life of Italian American Actor Vincent Schiavelli Posted by Jeanette at
9:36 AM 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."
These Minnesotans' lives continue to change for better Posted by Jeanette at
11:33 AM 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."
Casting Call Posted by Jeanette at
4:09 PM 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."
Fans can relive Mountaineers season, thanks to HS student Posted by Jeanette at
12:46 AM 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."
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.'"
Holiday shopping is easy at Henry's Hearts - Portion goes to Marfan Posted by Jeanette at
1:34 PM 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.
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."
Make-a-Wish Foundation grants wish for 15-year-old; Dylan Rohrer meets Pres. Bush Posted by Jeanette at
1:32 PM 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. "
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."
The Today Show - NBC - Tue., Nov. 29 - 9:43 a.m. EST Posted by Jeanette at
8:00 PM Al Larson, Jonathon Larson's father, will be featured on NBC's The Today Show Tuesday, November 29. Karen Murray, NMF board member and mother of 14-year-old Michael Murray, will also be featured. Tune in or set up your VCR/DVR/Tivo! THE TIME MAY NOT BE EXACT (9:43 a.m. EST), so maybe watch the whole show.
Larson died the night of the play's final dress rehearsal of a torn aneurysm in his chest, the underlying cause of which was Marfan's Syndrome, a disease that affects one in 5,000 Americans."
High roller - TV & Radio - Entertainment - Australia Posted by Jeanette at
6:37 AM High roller - TV & Radio - Entertainment - smh.com.au: "Jabe Babe. It's an unusual name for an unusual woman. She spent her first seven years with her schizophrenic mother (father unknown) before shuttling between foster families until she was a teenager. As an adult, she worked as a dominatrix in the sex industry, a career she enjoyed but eventually tired of. Her most striking feature is her extreme height - 188 centimetres - due to a genetic connective-tissue disorder called Marfan Syndrome. "
Marfan Life - Living with Marfan Syndrome - Posted by Jeanette at
2:30 PM Marfan Life - Living with Marfan Syndrome -: "Carol Arnette, Francesca Malara and Jeanette Navia help raise Marfan syndrome awareness in the local paper in Williamsburg, Va., The Virginia Gazette. November 26, 2005. Clicking on the article will take you to a larger version. It takes a very long time to load, but you can read the article."
Leap of Faith [RENT] Posted by Jeanette at
5:08 PM SignOnSanDiego.com > News > Features -- Leap of Faith: "... Ask cast veterans about that night – most heard the next morning of Larson's exit from an aneurism (related to Marfan's Syndrome) – and there is still visible pain. Taye Diggs (Benny in 'Rent'), a big man with sculptural looks and a savvy gaze, tells about the cast being called unexpectedly to the theater that morning ('We thought maybe the show was closing'), then he chokes up. So Anthony Rapp (Mark in the show) tells how one or two stunned souls started to sing, 'and we knew we had to find ourselves for Jonathan. As the songs came out of us, we felt galvanized but we were in shock. ...'"
Dr. Donohue - Nov. 26, 2005 Posted by Jeanette at
7:31 AM Dr. Donohue- 11/26/05: "DEAR DR. DONOHUE: I am the guardian of a 13-year-old boy who shows signs of Marfan's syndrome. How can I find out if he really has it? He is 6 feet tall, very thin and has long fingers and toes. -- K.M."
Thrown curve, Piedras cradle a precious gift Posted by Jeanette at
7:03 AM Rocky Mountain News: Rockies & MLB: Thrown curve, Piedras cradle a precious gift: "Eva was awake in another room, her cry carried through a monitor. Jorge said she is given four heart medicines at various times during the day. It's possible she might have Marfan Syndrome, a connective tissue disorder that can affect the heart, eyes, skeletal system and other organs.
In the case of the heart, the disease can cause an enlarged aorta, leading to the possibility that the aorta or aortic valve might have to be surgically replaced."
Hot property ("Rent") Posted by Jeanette at
6:50 AM Hot property: "For die-hard fans of 'Rent,' there really was no day but Wednesday. That's when director Chris Columbus' $40 million film adaptation of Jonathan Larson's Pulitzer and Tony award-winning musical opened in movie theaters."
Big screen for 'Rent' Posted by Jeanette at
11:49 PM Big screen for 'Rent': "Al Larson is a happy man. He's seen the long-awaited movie version of 'Rent,' his late son Jonathan's musical, and he thinks justice has been done to the Tony- and Pulitzer Prize-winning work."
A metatarsal equivalent to the metacarpal index in Marfan syndrome. Posted by Jeanette at
8:42 PM A metatarsal equivalent to the metacarpal index in Marfan syndrome.: "Foot problems are common in patients with Marfan syndrome because of the ligamentous laxity that affects the weightbearing joints most. Such patients frequently are seen by their general practitioners or podiatrists. Educating primary health care providers about a metatarsal index, if it is sufficiently sensitive and specific, may help patients get early and appropriate workup for connective tissue disorders. " [Links to abstract]
