MarfanLife.net | News blog

Telegraph | Arts | A visionary visited by angels: “Sir John is 60 and lucky to be alive. At 30 he had a stroke, followed later by heart surgery to correct a leaking valve, an effect of the Marfan syndrome (a condition affecting the body’s connective tissue and found in unusually tall people) he has had since birth. “

Thomas Schrantz sure is funny!

Yesterday’s Project Blog blogging marathon was fun. I’m already looking forward to the Blogathon next year.

If you sponsored me, THANK YOU! You should receive an e-mail in the next day or two reminding you of your pledge and giving you instructions about how to donate. If you want to do it now, I’ve posted the instructions here. You can still sponsor me through the Project Blog website (so the total amount of donations raised through Project Blog can be recorded), or if you want, you can always just donate to the National Marfan Foundation.

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!)

Julie Kurnitz
there in nebraska,
bright eyes, bright clothes, she
taught a room to laugh

I was maybe not going to post this, since it might look like I’m bragging. But the way I feel right now? I’ve been up for more than 24 hours, and I do feel I deserve something like this! At the National Marfan Foundation conference in Beverly Hills this month, I was surprised with a “Heart of the Matter” award. It’s sooo beautiful!

The inscription reads “Jeanette Navia In recognition of your commitment to the NMF and the Marfan community through the “Marfan List” and blogging for Marfan awareness. July 2004.” I blogged in the Blogathon last year, and was told that was when the decision was made. It’s so pretty! Thanks, everyone who was in on this!

I’m so punchy!

Chris Carnes
a picture i keep
of his fingers that could dance
across the strings