NMF to Partner with Barnes Jewish Hospital to Host 21st Annual NMF Conference

FOR IMMEDIATE RELEASE
July 13, 2005

Contact: Eileen Masciale, Consulting Director of Communications
National Marfan Foundation
631-665-2163
publicity@marfan.org

National Marfan Foundation (NMF) to Partner with Barnes Jewish Hospital to Host 21st Annual NMF Conference, August 4-7, 2005

Conference to Offer Free Clinic to 80 Patients Who Lack Access to Healthcare


PORT WASHINGTON, NY — The National Marfan Foundation (NMF) will partner with Dr. Alan C. Braverman, Professor of Medicine and Director of the Marfan Syndrome Clinic at Washington University in St. Louis School of Medicine and Barnes-Jewish Hospital, to host the 21st Annual NMF Conference at The Marriott Downtown Pavilion in St. Louis, from August 4-7, 2005. 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 500 are expected to attend.

Each year at the Conference, there are an increasing number of attendees in need of a proper diagnosis or assessment of their Marfan condition. Through the efforts of the NMF’s Professional Advisory Board and the hospital that co-hosts the Conference (this year, Barnes Jewish Hospital), the Foundation is fortunate to be able to offer these individuals medical consultations at the conference clinic. For them and their families, this clinic offers access to doctors truly knowledgeable about Marfan syndrome and provides vital information not available through their local health care plan.

“Access to healthcare is difficult for many Americans. Having a rare disorder that affects multiple body systems makes getting comprehensive care challenging at best, and for some, simply impossible. Many seen in our clinic lack access to any health care because they are not eligible for health insurance. For the uninsured, our clinic provides the only opportunity they have for proactive Marfan medical care. For those with limited financial means, the free clinic is truly a lifeline,” said Karen Wolk, LMSW, NMF Director of Support Services.

The “Clinic Day” kicks off the NMF Annual Conference on August 4-5 at the Marfan Syndrome Clinic at Barnes Jewish Hospital, where 80 individuals will be evaluated by cardiologists, geneticists, orthopedists, ophthalmologists, pulmonologists and cardiac surgeons. In addition, nearly 50 echocoardiograms will be performed. These patients are from 26 different states, as well as Puerto Rico, Syria and the Philippines.

NMF Conference has Family Focus
General conference sessions start on August 6, with medical presentations at the Marriott. 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 August 7, workshops about the social concerns of the disorder will be held.

Awards Banquet
In addition to the presentation of medical information, the conference highlights extraordinary contributions to the Marfan syndrome community during an awards banquet on August 7 at the Chase Park Plaza..

At the banquet, the NMF will award its highest medical honor, the Antoine Marfan Award, to Jessica G. Davis, who is co-director of the medical genetics program at New York Hospital-Cornell Medical Center. Dr. Davis is being honored for her compassionate attention to the medical and emotional needs of individuals with the Marfan syndrome and their families for more than two decades.

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 http://www.marfan.org or call the NMF at 800-8-MARFAN.