GONE!

Goodbye, Blogger.com

~~It's been Sweet.{2005-2007}

Believe.



Love always, to my friends,

Will.

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"

E-Mail Message:

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.