Jeff, Joe and Julie
Posted at 8:00 AM
Every year since I got to know other people beside myself with the Marfan syndrome there have been painful losses. I couldn't list all those who I've gotten to know, even for a bit, like Scott Keifer, who I only heard speaking at a conference once, but he made me laugh so hard I felt great about being part of the Marfan community. Or Chris Paulsen, whose posts to Marfan-List always made me crack up. Or Jane Harris, who I knew both online and off. It is alway so hard to hear of their deaths, at such young ages.

This year, three people who were very close to the Marfan community in many ways passed away. Jeff Goldman, Joe Neustadt, and Julie Kurnitz are all remembered for their laughter and love. There is a beautiful picture of Julie Kurnitz here on the Canadian Marfan website. A woman who sent me an off-line post this evening said she thought Julie's "Clinical Trials" ought to be mandatory viewing for doctors.

I thought about all the friends the Marfan community has lost over the last few years throughout the day and night today as I blogged, and also thought of those who are still with us, helping us laugh and being there when we cry. I am very grateful to know so many wonderful people including the staff of the NMF, my fellow board and committee members, and of course all the people who live with the Marfan syndome in their lives or the lives of their families.

(Okay, that sounds a bit maudlin, but I haven't had sleep in over 24 hours. I mean it all, though!)