FYI from the NHLBI Index

January 2006: Vol. 6, Issue 3
Constituents' Corner

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Movie Boosts Marfan Awareness

From National Marfan Foundation

The National Marfan Foundation has been working hard to make its mark as the movie version of the Tony Award-winning Broadway play “RENT” hit the silver screen nationwide. The Broadway show was written by Pulitzer Prize-winning playwright Jonathan Larson who died of an aortic dissection (a tear in the large artery near the heart) before its opening in 1996. His death is strongly believed to have been caused by Marfan syndrome, a connective tissue disorder that affects the bones, eyes, heart, lungs, and blood vessels. Only after his death did Jonathan’s family and friends learn that his tall, lanky frame, indented chest bone, and other features were outward signs of Marfan syndrome, which puts people at high risk for aortic dissection. Those diagnosed with Marfan syndrome undergo annual heart evaluations, are prescribed medications, and have surgery before the aorta tears. With treatment, a patient can expect to live a normal life span. Jonathan’s father, Al Larson said, “We hope that the excitement about the movie translates into more people learning about what happened to Jonathan. For those who learn about Marfan syndrome and are diagnosed, the film can truly be life-saving.” The “RENT” DVD, due out in the Spring of 2006, will include a public service announcement about Marfan syndrome.

Submitted by Josephine Grima, National Marfan Foundation

Modified 6/20/06
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National Public Health Stroke Conference

From National Stroke Association

Emergency Medical Services and Systems was the focus of the fourth annual National Public Health Stroke Summit of the National Stroke Association (NSA), held in Denver, CO, December 5–7, 2005. Supported by a grant from the Centers for Disease Control and Prevention, the conference was part of a five-year series to educate public health professionals on the latest stroke issues, interventions, resources, and tools. The 2005 Summit included presentations by stroke specialists from around the country on the topics of emergency stroke protocols, stroke center certification, and the use of telemedicine in emergency stroke situations. During the past several years, conference participants have collaborated to create the NSA’s Stroke Program Implementation Guide to assist state health agencies with the development and implementation of state stroke plans and programs. This year’s conference included roundtable discussions to allow state public health and health care professionals to confer on a variety of hot topics. Founded in 1984, NSA is the only national organization in the United States that focuses 100% of its efforts on stroke. For more information visit

Submitted by Colette LaFosse, National Stroke Association

Modified 6/20/06
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