MarfanLife.net | News blog

Recognizing New Aneurysm Syndrome Can Save Lives: “A research team led by Johns Hopkins doctors has defined the physical traits and genetic basis of a new aortic aneurysm syndrome that is extremely aggressive and can cause death in early childhood. “

National Girls and Women in Sports Day: “NGWSD began in 1987 as a day to remember Olympic volleyball player Flo Hyman for her athletic achievements and her work to assure equality for women’s sports. Hyman died of Marfan’s Syndrome in 1986 while competing in a volleyball tournament in Japan. Since that time, NGWSD has evolved into a day to acknowledge the past and recognize current sports achievements, the positive influence of sports participation, and the continuing struggle for equality and access for women in sports.”

Joey Mahon, 18, friend to many, died Saturday

CHURCHVILLE — Joey Mahon loved to win, but he wanted to win fair and square.

“He liked to win (and) I wasn’t one to let him win just ’cause,” nurse Patricia Childs said. No matter the game, it may have been a little tougher for Joey, who suffered from a connective tissue disorder since birth. But tackling the difficult was the norm for Joey.”

The National Marfan Foundation: “The NMF’s brand new have heart red wristband is now available from the NMF!”

ThePittsburghChannel.com - Health - Healthcast: The Marfan Syndrome: “Imagine having a relatively rare, potentially life-threatening disorder, but no one — including emergency room doctors — recognizes it. That’s a reality for many people with the Marfan syndrome.”

HubMed: Marfan syndrome Abstracts from medical journals.