MarfanLife.net | News blog

No, Thomas, not the hope that Cafe Press will bring back lunchboxes, but hope that the needless young deaths of Marfan folk, like those listed in the following post, and of Steve Jerkins and Angela Volan, both of whom died this year, need not happen so often in the future.

Blogging all night was fun, as it is every year (although Bryan did most of the blogging last year). I was definitely bonkers by the end of the day. I had been looking forward to that last post (the 9:00 a.m. post, with the picture of losartan), but when 8:30 came along, I just could not make my fingers go the right way. My computer got very sluggish, too, which didn’t help. But with visits and emails from Karen, Teri, Ellen, Nancy, Kari, Miriam, Bob, Maya, Bryan, Jennie, Heather, Mary, Dad and Michael, I was able to get through. Thanks for the company, thanks for the pictures and posts, thanks for the pledges!

We remember on this day June 11th, 2006

• Edgar Alegria
• Ciara Quinn
• Virginia B. Areen
• Carolyn Jean Powell
• Amy Barnes
• Joe Neustadt
• Jeff Goldman
• Dr. Holly Fickel
• Christian Banke
• Elizabeth I. Curts
• James C. Curts
• Francis W. Olson
• Susan Marchese
• Francis Colby
• Jimmy Conway
• Frank Krowzack
• Colin Peter Irish
• Arthur Sidney Irish
• Louise Doyle
• Thomas Doyle
• Timothy Doyle
• Patrick Bryant
• Neta Slotowski

Every year, the Northern Illinois Chapter has an annual walk in partnership with Tall Clubs, International. Here are some pictures from the June 12, 2006 walk.

Teen leaders at the NMF conference

Mary writes: My marfan son and his magical digital marfan shadow.  How did he do that?

Thank you Jeanette for all your hard work.  No you are not seeing double!
-mary

There’s still time to pledge! The pledges are up to $1941.00! Wow!! Thanks, everyone! You’ll get a reminder to send your pledge in to the NMF. You can pay online if your pledge is more than $10 and you choose Fundraising Event when you use the NMF’s online donation form. Please credit the Blogathon when you pay, whichever way you pay. The NMF wants to keep track of things like that — through what fundraising events people donate.

If you’re in or anywhere near Eastern Iowa on September 2, why don’t you see if you can join in the 2006 Scott Kiefer Have a Heart for Marfan Walk, Fun, Run. The Iowa NMF Chapter is always up to something!

From a reader:

“Here are the meds for my 6 year old marfan child and yes one is a “Flintstone”. She takes these everyday. She is pretty lucky as I know there are other marfan patients who take much more in a day. She has been taking meds since she was 3 months old.

“On a recent family trip I had a 500 ml bottle I was measuring doses from and was asked why I traveled with such a big jug of meds. Hmmm…I think the picture explains it. She chews through a bottle in 13.8 days. We get giant boxes of meds through the mail. The mail man must have a hernia by now.”

[I posted this, but then was told that the picture didn’t show up. I’m just bonkers in the head! Less than one hour to go and I’ll crash! -Jeanette, 8:21 a.m. EDT]

No blog roll here – and it’s your last stop!
Don’t quit now – we’re about to rock!
Take a wander back to Willo’s Web if you dare,
and see what’s up this summer for her bear!

ToyVoyagers: Traveling the world on human kindness

Like I said, this post won’t make Marfan sense!

Maya sent me this. I really like the shot.

It’s another day today already. Time went by fast. I know I’ve been lax about categorizing these posts. I’ll do that some day, perhaps during a class or a boring phone call. It’s been fun, as usual! My next post won’t make any sense to people reading this for Marfan stuff. It’s just part of the Blogathon. Unless you come by specifically for the post, just pay it no never mind.