MarfanLife.net | News blog

Jonathan Martin is the Director of Education and Awareness Programs, and Irene Maumenee is the ophthalmologist whose expertise has allowed me to see things I hadn’t seen before, and to realize just how blurry my eyesight was for 46 years.

Both Kari and Teri sent me a copy of this.

I’m yawning and yawning. Only ten more half-hours to go. I’ll be fine. I ate some more stir-fry veggies and will make some more salsa. The salsa is so good! I got all the ingredients in a kit from one of the vendors at the Williamsburg Farmers’ Market this morning, before the ‘thon began.

I haven’t posted a picture of myself yet, so here is one. I like this picture! Maya took it at the conference, at the 35th anniversary dinner.

Maya sent me these. Her best friend, Sandy, died when they were 13 years old. Here is Sandy’s square.

Michael’s the Marf of the family. Really cute kid! The Steele’s are from Massachusetts. They’re at the ballgame that was part of the NMF conference earlier this month.

Different clothes, but still a cuty young lady! I don’t know who the guy is (can’t read his nametag). Anyone know? Please post in the comments!

The Schaberg’s sent a picture of Christopher and Nicholas Burrus playing at the NMF Conference dinner. The music was very nice. The whole dinner was wonderful and the music was just perfect for it.

Isn’t this a great picture of parents so proud of their little lady? Cute!

At the conference in Philly

This is TwinSong, Nicholas and Christopher Burrus, with their Mom, Danielle. TwinSong played strings during the dinner at the NMF Conference in Philadelphia earlier this month.
I snagged a couple of their business cards when I was there.

Corbins Attend Marfan Foundation Conference
Laura Corbin and her son Josh of Charleston recently attended the 22nd annual National Marfan Foundation Conference that was held in Philadelphia.

The NMF annual conference enables people with Marfan Syndrome and related corrective tissue disorders, and their families to meet leading Marfan Syndrome researches and physicians to learn about new medical and genetic research first hand.

Over 600 people and their families attended the conference. Attendees participated in the NMF’s 25th anniversary celebration.

Princeton and Central New Jersey - The Lawrence Ledger - 07/13/2006 - Teen with Marfan syndrome inspired by Mom
When she was 3 years old, doctors diagnosed Allison Brobst with a disorder that will follow her for the rest of her life. Like her mother and grandmother, Allison, now 14, has Marfan syndrome.
Marfan syndrome is a connective tissue disorder that causes a number of outward signs (among them, disproportionately long fingers, toes, arms and legs; indented or protruding chest bone), but also something you cannot see — a fragile aorta that can lead to a fatal dissection or rupture.
Allison is 14 years old and 6-foot-1. She cannot play competitive sports because of the stress it would cause to her heart. She has a hard time finding clothes that fit her properly. But none of these things brings her down for very long. She still swims and still plays a little soccer here and there.