MarfanLife.net | News blog

Are you standing tall? Join the club: “‘I’m just here to promote tallness - that and awareness of tall people,’ said the 6-foot-3 Heater.

To that end, Heater said, the club pioneered the development of the California king-size mattress, which is 4 inches longer than your standard king size to accommodate king-size snoozers.”

I’m 13 and 6 foot 2 inches tall: “Press Packer Matthew has a rare medical condition called Marfan Syndrome which makes him tall and thin. In his report he tells us what Marfan Syndrome is and how it affects him.”

As many of us in the Marfan community know, Jeanette spends alot of her time and effort maintaining web sites and an email-list dedicated to the Marfan Syndrome. After staying up for this Blogathon, I have a better appreciation of how much work it takes to maintian this kind of thing — It takes alot of work.

Thank you Jeanette!

An advantage to having Marfan? Long arms capable of snapping self-portraits. As you can see, Animal has fallen asleep on my shoulder, Penguie has gone cross-eyed, and I’ve developed a slightly crazed look.

I’d like to say “Thank you” to everyone who pledged this year and to all of you who followed along and emailed your comments and support.

I’d also like to thank my wife Barb for going out and capturing a very very large cup of coffee and some donuts to keep me going all day and night. And a great big Thank You to all the folks in the Marfan community who live with this condition every day and who are working to help us all live longer, healthier & happier lives.

Cheers,
Bryan

This message came to us from Eileen Masciale, the Director of Communications for the NMF. Thank you Eileen!

RENT was written by Jonathan Larson, who died as a result of an aortic dissection due to the Marfan syndrome. He didn’t know he had the Marfan syndrome and the two hospital emergency departments that he went to did not recognize the aortic dissection.

Jonathan’s family has been a huge supporter of the NMF’s Emergency Medicine Campaign, which aims to increase awareness of the diagnosis and treatment of aortic dissection and Marfan syndrome in emergency departments nationwide. Their help has been critical in the Foundation’s efforts.

More information on the film can be found at this link.

Wow - This is one active group! Here is a picture from last year’s “Big Hearts, Deep Pockets,” a comedy show to benefit the Marfan Syndrome. It was held in memory of Scott Kiefer, a local comedian who died of complications from the Marfan Syndrome. See the complete story in the Iowa Chapter’s Spring 2005 Newsletter (Adobe Reader required).

It’s me again, Jeanette. I would have posted more yesterday, but I was often very busy explaining what a “blog” was, and what I was doing (or, much more accurately, letting Bryan do because I was too busy talking with people). I also told lots of people about Marfan-List, so maybe we’ll be hearing from some new people soon. This year’s conference was the biggest ever. Around 700 people participated. The hotel rooms were sold out and more had to be found at another hotel. The conference was one of the most family-friendly ever, as the cost was kept down as much as possible. This was due in very large part to the St. Louis Area Chapter of the NMF (I need to find the exact title of their chapter — I’m not sure that’s it), and to Dr. Alan Braverman’s efforts at fund-raising.

Next year’s conference will be in Philadelphia. I really hope as many people as possible can come! Over 100 people were able to come because of assistance with “scholarships.” There are three scholarship programs available. People donate money to help others be able to afford coming. I’ll post more information about scholarships when I get back home, but for now, I want to thank EVERYONE who has donated to a scholarship fund to help individuals and families come, and to thank everyone who has taken advantage of the scholarships to come. Everyone learns from everyone else when people share, so when more people come, the better the program is for everyone.

I’ve got to get ready now to go to a meeting about the “Quality of Life” for a Marfan-affected person at 7 a.m. (quality of life?? 7:00 a.m.??). I got lots of pictures at the conference, and there were lots of cameras going off all over the place, so I’ll be sharing more pictures later (after the Blogathon).

Jeanette

This is a picture of Dr. Jessica Davis and Mohammed Mouchli at the St. Louis NMF Conference.

As Director of Education and Awareness Programs for the National Marfan Foundation, I often get asked what it was that brought me into this work– What�s my connection? There is often an assumption that to work for a non-profit health organization, I must have had an affected family member that originally peaked my interest in Marfan syndrome. Not so much� Read the rest of this entry »

These pictures are from the Sept 2004 event, and were submitted by Teri Dean from the Iowa Chapter of the National Marfan Foundation.