Cedars-Sinai Medical Center to Host 20th Annual NMF Conference, July 7-10, 2004

Conference to Coincide with New Marfan Syndrome Center at Cedars-Sinai

PORT WASHINGTON, NY — The National Marfan Foundation (NMF) will partner with Cedars- Sinai Medical Center to host the 20th Annual NMF Conference at The Beverly Hilton Hotel in Beverly Hills, CA, from July 7-10, 2004. The NMF Annual Conference enables people with the Marfan syndrome and related connective tissue disorders, and their families, to meet leading Marfan syndrome researchers and physicians, learn about new medical and genetic research, and find out how they can prevent aortic dissection (for which they are at high risk). More than 450 are expected to attend.

At the same time, Cedars-Sinai will be opening its comprehensive Marfan Syndrome Center to unite the various specialists who provide the necessary coordinated care to patients with the Marfan syndrome.

“We are thrilled to bring the NMF Annual Conference to Los Angeles area and help our host, Cedars-Sinai, celebrate the opening of its Marfan syndrome clinic. It is certainly a tribute to the dedication of the health care professionals at Cedars-Sinai, who are committed to providing the complicated, multi-system care needed by people who have the Marfan syndrome,” said NMF President and CEO Carolyn Levering. “We are also extremely grateful to the hard-working NMF volunteers in Southern California who are coordinating special programming for the conference.”

NMF Conference has Family Focus
The NMF Annual Conference begins on July 7-8 at the Cedars-Sinai Medical Center, where people who suspect that they have the disorder can be evaluated by Marfan syndrome experts from the host institution and other from all over the country (by appointment only). General conference sessions start on July 9, with medical presentations at The Beverly Hilton. A medical panel comprised of leading Marfan syndrome researchers and physicians nationwide will address various aspects of the Marfan syndrome, including current genetic research, surgical advancements and drug treatments, and answer questions from conference attendees.

The conference also features small-group workshops where attendees can discuss specific medical concerns of the Marfan syndrome with physicians and other medical professionals. On July 10, workshops about the social concerns of the disorder will be held.

Awards Luncheon
In addition to the presentation of medical information, the conference highlights extraordinary contributions to the Marfan syndrome community during an awards luncheon on July 9.

At the luncheon, the NMF will award its highest medical honor, the Antoine Marfan Award, to Tirone David, M.D., Professor of Surgery and Chief of the Division of Cardiovascular Surgery, Toronto General Hospital, Toronto, for his outstanding contributions to the development of cardiovascular surgery and the surgical care of people with the Marfan syndrome. Dr. David has developed novel operative procedures to treat patients with heart valve disease, complications of myocardial infarction and thoracic aneurysms, several of them bearing his name.

The Marfan Syndrome and the National Marfan Foundation
The Marfan syndrome is a potentially fatal genetic disorder of connective tissue. The Marfan syndrome and related connective tissue disorders affect approximately 200,000 Americans. Because connective tissue makes up the entire body, the disorder manifests itself in many body systems, including the skeletal system, eyes, lungs, blood vessels and heart. Many people with the Marfan syndrome experience an expansion of the aorta. Without proper monitoring and medications to reduce the stress on the aorta, affected people are at high risk for aortic dissection or rupture, which could result in sudden death.

Recent studies about the increased life expectancy for people with the Marfan syndrome provide great hope and optimism, but only through increased awareness, earlier diagnosis and proper treatment can they expect to live a normal lifespan.

The NMF was founded in 1981 to provide accurate and timely information about the disorder to patients, family members and physicians; to serve as a resource for medical information and patient support; and to support and foster research.

To obtain additional information about the conference and to register, please visit the NMF on line at www.marfan.org or call the NMF at 800-8-MARFAN.