MarfanLife.net | News blog

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.

Wired News: Old Drug Could Fix Hearts
Jonathan Larson, the Tony Award-winning playwright of the Broadway musical Rent, died of a torn aorta onng day. He was 35 years old.

Scientists believe that a common hypertension drug called losartan could have saved him.

Waterford Today Pony and trap ride raises over €7,000
A team of Ponies and Traps, led by local farrier Billy Meany, on a drive from Kilmacow to Tramore on Saturday last, managed to raise over e7,000 for research into a rare connective tissue disorder called Marfan Syndrome.

Shooting at clay pigeons for Marfan charity
On Saturday, chairman Alan Skepperd up his farm in Harthill for people to come and have a go at the sport, and despite foul weather, it raised £1,000.
Novices and professionals alike braved the mud to go along and try their hand at shooting, helped along by professionals brought in to make sure the day ran smoothly.

C-section, heart surgery in a day
“About eight months pregnant with twins, Mandilyn Stone felt a sharp pain in her throat as she stood at a supermarket meat counter on Aug. 20. ‘At first I tried to ignore it; I just thought everything would be OK,’ Stone said. ‘But when the pain hit my back I was really scared’

“She grabbed her neck and collapsed. …”