Loyola University Health System to Host 19th Annual National Marfan Foundation Conference, July 9-12, 2003


Contact:
Eileen Masciale
Consulting Director of Communications
Office: 631-665-2163 (until July 8)
Cell: 631-838-6748 (July 9-13)
publicity@marfan.org


Joanne Swanson
Loyola University Health System
Media Relations
708-216-3200

PORT WASHINGTON, NY - The Ronald McDonald® Children's Hospital of Loyola University Medical Center,Loyola's Cardiovascular Institute and Loyola University Chicago Stritch School of Medicine host the 19th Annual National Marfan Foundation (NMF) Conference,in Oak Brook, Ill., from July 9-12, 2003. 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, and learn about new medical and genetic research firsthand. More than 450 people, primarily affected people and their families, are expected to attend.


"We are thrilled to bring the NMF Annual Conference to the Chicago area in only the third year since the Marfan Clinic at Loyola was opened. It is certainly a tribute to the dedication of the health care professionals at Loyola, who are committed to providing comprehensive, coordinated care to people with the Marfan syndrome," said NMF President and CEO Carolyn Levering. "We are also extremely grateful to the hard-working volunteers at the NMF’s Northern Illinois Chapter who are coordinating fabulous programs for teens and children and fun events for all attendees."



NMF Conference has Family Focus



The NMF Annual Conference begins on July 9-10 at the Marfan Clinic at Loyola's Oakbrook Terrace Medical Center,1S260 Summit Avenue, Oakbrook Terrace, Ill., where people who suspect that they have the Marfan syndrome can be examined by Marfan experts from all over the country (by appointment only). General conference sessions start on July 11, with medical presentations at the Chicago Marriott Oak Brook,1401 West 22nd Street, Oak Brook, Ill. 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 12, workshops about the social concerns of the disorder will be held.



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.