MarfanLife.net | News blog

HHMI News: Early Surgery Recommended for Those with Life-Threatening Vascular Disorder
According to a new study of patients with a life-threatening condition known as Loeys-Dietz syndrome (LDS), children with the inherited vascular disorder should be considered early candidates for surgery to prevent lethal rupture of the aorta, the heart’s main artery.

From Karen Schaberg: “Here is our wonderful Emma, 4, from NJ. The first thing her mom said when she was born was, “wow, look how long her fingers and toes are!”. However, despite the doctors being told about the family history of aneurysms, it wasn’t diagnosed until last summer. Her eye was wandering and the opthamologist picked up her dislocated lenses. 24 hrs. later we went to a geneticist and eventually ended up at John Hopkins. Emma loves Disney princesses and dancing, as you can tell from her dance pose.”

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.

health insurance

The man on the right, Dr. Hal Dietz, has proposed the most encouraging news in the treatment of Marfan syndrome. The pills seen here, losartan, have helped mice whose tissue was like that of Marfan patients. If losartan acts the same way in humans — and he cautions that we must respect that if — the more dangerous problems with Marfan syndrome could be ameliorated. For more information about losartan and Marfan syndrome, read Blood Pressure Medication May Revolutionize Treatment for Marfan Syndrome.
Other researchers and surgeons of Marfan syndrome have helped tremendously over the years, and continue to do so. Below are just some of these incredible people.

Cheryl Gasner, Reed Pyeritz, David Liang, Lynn Sakai, Irene Maumenee, (that’s me, twice), Richard Deveraux, Cheryl again and Craig Miller. I know the Marfan community thanks them all for their contributions to the betterment of our lives.I know I’ve left some researchers out. Could someone send me photos? Thanks!
Nancy, thanks for these photos!

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!