March 19,1999
 

Dear National Marfan Foundation Member,

It is time for the fourth meeting of the Washington-Baltimore Area Marfan Support Group.   The meeting will be on Saturday, April 17, 1999.  Clair Francomano, M.D., Chief, Medical Genetics Branch, Clinical Director, NHGRI (National Human Genome Research Institute), at NIH, and a member of the NMF Professional Advisory Board, will be our speaker.  She will tell us about NIH and the Marfan Syndrome study:  why, what, how long the study will last, how one can get into the study, what is involved, etc.  Please bring your questions for Dr. Francomano, or if you have questions, for which she may need to prepare, please call or write me with them and I’ll relay them to her.

As were the previous meetings, this one will be held from 1:00 until 5:00 P.M. at NIH, building 31C.  The meeting will be in Conference Room C10.  If you need directions for parking or to the conference room, please feel free to call me.

I want to express my thanks to Theresa Derro for taking notes at our meeting last October.  The notes are on our website; however, if you do not have access to the Internet, please call me and I’ll send you a copy of the minutes.

And I want to express my thanks to Ines Mason for offering to design and implement a web site for our support group.  The website address is:
                                http://www.geocities.com/Heartland/Oaks/6451/
Among other items, she has included notes from previous meetings and a map to NIH.  Thanks, Ines, for giving your time and creativity.

And thanks also to Patricia McCabe for initiating a Walk-a-thon here based on the Walk-a-thon started by the Northern Illinois Chapter six years ago.  Our date is the one chosen by the Northern Illinois Chapter and continued by NMF:  Sunday, June 13, 1999.

Also on the agenda: on Saturday, October 16, 1999, Dr. Vincent Gott, a professor of surgery and a cardiovascular surgeon at Johns Hopkins Hospital who has operated on the aorta of many patients with Marfan syndrome, a member of the Professional Advisory Board of the NMF, and co-director of the new Broccoli Aortic Center at Hopkins.  He will talk to us about the history of the Marfan syndrome, surgery of repair of the aorta in Marfan patients, and the Broccoli Aortic Center.  He will bring an artificial valve for us to see and feel.  He is a very good friend of Marfan patients with a lot to share with us; I am sure you will find his talk both interesting and enlightening.  Same time, same place.

As always, please feel free to call me if you need a map of NIH.  Also as always, please feel free to call or write me with thoughts, suggestions, concerns, questions, etc.  I’m looking forward to seeing you at the meeting on Saturday, April 17th.
 

Sincerely,
 
Betsy Gaffney
301-610-0007