Marfan Life

WTOK | Make A Wish Come True
Colin Mochrie and Brad Sherwood were at the Riley Center Saturday doing what they do best… Improv comedy. With the help of The Make A Wish Foundation they helped to make a dream come true.

Andrew Conley attends Southeast Lauderdale where he is like any other kid his age. He knows everything there is to know about the Lord of the Rings and he loves to laugh. Andrew also has Marfan Syndrome, a connective tissue disorder. One of the symptoms of the disorder is scoliosis, or a curvature of the spine. Because of this, he had to have back surgery.

deseretnews.com | Giving man still helping after death
By all accounts, Jordan Fowers of Farmington was a giving sort of person. He was the kind of guy who, if you were riding next to him on an airplane, he’d give you the armrest. The kind of guy who, when he went off to Mexico five years ago for an LDS mission, gave his watch away to his first companion. The kind of guy who, two years later when he came back home to Farmington, barely had the suit left on his back because he gave everything else away.
Which explains why Jordan’s family is so intent on honoring his memory by giving away something with his name on it.

Yakima Herald Republic Online: Marfan sets him apart
Lanky, long and lithe, DeVonte Combs is a basketball coach’s dream.

At least a foot taller than anyone else in his class, he’s the type of youngster sports fans watch through the years with gleeful anticipation.

Athlete died from torn aorta in heart; player had recent team doctor visit
A University of Toledo basketball player had been seen by the team’s chief physician just days before his sudden collapse and death Monday of an acute heart condition.

Oregon Health & Science Univ Will Study Marfan Syndrome, Other Causes Of Aortic Aneurysms - (Medford Article)
PORTLAND, Oregon - Oregon Health & Science University will host one of five regional clinical centers for the study of genetically triggered thoracic aortic aneurysms and other cardiovascular complications as part of an initiative funded by the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health.

Aretha Franklin to Perform in New York City on November 14
The National Marfan Foundation presents Aretha Franklin, a benefit concert from the heart of the Queen of Soul, on November 14, 8 pm, at the Hammerstein Ballroom (Manhattan Center Studios, 311 West 34th Street, between 8th and 9th Avenues).

Ticket prices are $500, $250 and $200 for orchestra seating and $125 and $75 for mezzanine seating. Tickets are available through Ticketmaster beginning October 9.

DesMoinesRegister.com
WEST DES MOINES - 7 p.m. Saturday: “Big Hearts, Deep Pockets.” “Comedy Co-Operative” will perform. Benefits Heart of Iowa Chapter of the National Marfan Foundation’s educational programs and conference scholarships. Billy Joe’s Pitcher Show, 1701 25th St., West Des Moines. $10 in advance, $12.50 at the door. (800) 862-7326. www.heartofiowa.org.

Press-Telegram - Local battled Marfan’s
CERRITOS - Deborah Yolanda Sahli knew what she was dealing with when symptoms of the genetic disease known as Marfan syndrome began cropping up with increasing frequency a few years ago.

Yet despite losing her 22-year-old son, mother, grandfather, two brothers and a cousin to the disease, Debbie refused to let the disorder dampen her spirit.

Press-Telegram - Local battled Marfan’s
CERRITOS - Deborah Yolanda Sahli knew what she was dealing with when symptoms of the genetic disease known as Marfan syndrome began cropping up with increasing frequency a few years ago.

Yet despite losing her 22-year-old son, mother, grandfather, two brothers and a cousin to the disease, Debbie refused to let the disorder dampen her spirit.

Pediatric Heart Network - ISV for Healthcare Providers
Marfan Study Basics

Marfan is a Trial of Beta Blocker (BB) Therapy (Atenolol) vs. Angiotensin II Receptor Blocker (ARB) Therapy (Losartan) in Individuals with Marfan Syndrome (MFS). The target number of participants is 604. The accrual period is approximately 6 years with recruitment to begin in the Fall of 2006.