Features of Marfan syndrome:

Tall, thin stature - Long fingers - Unusually long arms and legs - Curvature of the spine (Scoliosis) ~ Chest bone that sticks in or out ~ Flexible joints ~ Crowded teeth ~ Nearsightedness ~ Dislocated lenses ~ Stretch marks (not due to pregnancy) ~ Collapsed lung ~ Aortic dilation ~ Aortic dissection ~ Mitral valve prolapse ~ Leaking valves in the heart

Sony Unveils Mobile Rent Wallpaper and Charity Donation Program

September 14th, 2005 by Jeanette

Sony Unveils Mobile Rent Wallpaper and Charity Donation Program: “Fans of the long-running Broadway show can download their favorite RENT characters to their mobile phone while, at the same time, be donating money to worthy charities. For each of the eight main characters, Roger, Mimi, Mark, Collins, Angel, Benny, Joanne and Maureen, a mobile wallpaper has been created and is available to Cingular and Sprint subscribers by sending a text message of ‘RENT’ to 4SONY (4-7669) from a mobile phone. Each wallpaper will cost $2.50. A portion of all proceeds collected from the sale of these wallpapers will be donated to the following three charities:

The National Marfan Foundation, The Jonathan Larson Performing Arts Foundation and Broadway Cares/Equity Fights Aids Foundation.”

Posted in News stories, Fund-raising, Art (books, movies, art) | No Comments »

Lacombe, AB (Canada) : Golf classic more than a tournament

September 13th, 2005 by Jeanette

Lacombe Globe, Lacombe, AB: “Lacombe Globe — One of Lacombe’s largest golf tournaments isn’t just about competition, it’s about improving people�s lives.”

Posted in News stories, Fund-raising, Sports | No Comments »

John Tavener tells Judith Mackrell how his heart condition inspired a show

September 7th, 2005 by Jeanette

For Tavener, the obsession grew out of his own medical history. He has Marfan syndrome, a complicated heart condition, and it was while undergoing investigative surgery that he encountered the work of heart-imaging specialist Philip Kilner. Tavener was entranced by the scans Kilner showed him: “The pumping of the heart’s chambers and the movement of the blood around the arteries - it looked beautiful to me, like a dance.”

The images made him think about an old score, Laila, that he had begun writing a few years ago, but abandoned as unworkable. It was a dramatic choral work, based on a Sufi love poem.”

Posted in News stories, Marfan individuals | No Comments »

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