NEEDFUL EDIT: I JUST RECEIVED THIS E-MAIL FROM THE NATIONAL MARFAN FOUNDATION. BECAUSE THIS IS A SYNDROME/CONDITION I'VE LIVED WITH, I THOUGHT I'D POST THIS MESSAGE FYI. ANYONE INTERESTED TO KNOW MORE ABOUT MARFAN'S, SHOULD TUNE IN TO "The Today Show," on THURSDAY, NOVEMBER 15TH. THANK YOU, for being a friend & reader of this blog, and putting up with all of the many transitions & "personas" I've been. (to paraphrase Todd Rundgren:
"A THEME GOES ON FOREVER"
National Marfan Foundation
We are pleased to inform you that Marfan syndrome is expected to get national attention on Thursday, November 15*, as a result of a feature segment on the Today Show, on NBC-TV.
We expect the segment to feature the 2007 Annual Conference as well as the losartan vs. atenolol clinical trial. We are excited because we know that the producer got a lot of great footage, especially at the conference, although we can never know in advance exactly how the piece was cut. With a viewing audience in the millions, we anticipate that the segment will raise a great deal of awareness of Marfan syndrome. We hope that, as a result of seeing the segment, more people will get diagnosed and consider enrolling in the clinical trial.
The NMF is grateful to so many people for their participation in the tapings - for being interviewed or for helping with the many logistics along the way. This includes NMF members Dawn and Brooke Pulliam, Courtney McRae and her parents, and all the children, teens and families at the Annual Conference who were videotaped or interviewed by NBC; Dr. Hal Dietz, Joann Harper, Gretchen Oswald and the nurses in the pediatric outpatient clinic at Johns Hopkins; and the public relations department at Johns Hopkins and the Sheraton Palo Alto.
Please share this information with your Marfan community.
* Please note that this date could change at the last minute, depending on news of the day. We will inform you, if we know in advance.
Famous (last) Words to Ponder while listening to the Music:
[It's been a great ride...can I get off now???~~Will]
"He has all the virtues I dislike and none of the vices I admire." -- Winston Churchill
"I have never killed a man, but I have read many obituaries with great pleasure." -- Clarence Darrow
"He has never been known to use a word that might send a reader to the dictionary." -- William Faulkner (about Ernest Hemingway)
"I've had a perfectly wonderful evening. But this wasn't it." -- Groucho Marx
"I didn't attend the funeral, but I sent a nice letter saying I approved of it." -- Mark Twain
"He has no enemies, but is intensely disliked by his friends." -- Oscar Wilde
"I am enclosing two tickets to the first night of my new play; bring a friend... If you have one." -- George Bernard Shaw to Winston Churchill...followed by Churchill's response: "Cannot possibly attend first night, will attend second, if there is one." -- Winston Churchill
"I feel so miserable without you; it's almost like having you here." -- Stephen Bishop
"He is a self-made man and worships his creator." -- John Bright
"I've just learned about his illness. Let's hope it's nothing trivial." -- Irvin S. Cobb
"He is not only dull himself; he is the cause of dullness in others." -- Samuel Johnson
"He is simply a shiver looking for a spine to run up." -- Paul Keating
"He had delusions of adequacy." -- Walter Kerr
"Why do you sit there looking like an envelope without any address on it?" -- Mark Twain
"His mother should have thrown him away and kept the stork." -- Mae West
"Some cause happiness wherever they go; others, whenever they go." --Oscar Wilde
Lady Astor once remarked to Winston Churchill at a Dinner Party, "Winston, if you were my husband, I would poison your coffee!" Winston replied, "Madam if I were your husband I would drink it!"
Lady Astor also once remarked to Winston Churchill at a Dinner Party, "Sir Winston, you're drunk!" To which, Winston replied, "Yes, Madam, I am. And you're ugly! But in the morning, I will be sober. And you will still be ugly!"