Monsignor Thomas J. Hartman and Rabbi Marc A. Gelman ...The God Squad.
Hundreds of unnecessary deaths occur each year as the result of undetected Marfan syndrome (MFS). Deaths may have been prevented with proper diagnosis. Hollywood star, John Ritter, 54 is believed to have died suddenly from an aortic dissection, a tear in the weakened wall of an aneurysm. Tony Award winning RENT playwright, Jonathan Larsen died of Marfan syndrome. Mysteriously, otherwise healthy young people die while participating in sports activities. There is tremendous medical unfamiliarity with MFS. Education for early detection and proper diagnosis is the key in saving lives.
Port Washington is now the home of the National Marfan Foundation Education and Research Center, which is located at 22 Manhasset Avenue. On Dec. 3, a reception with informal tours of the new facility was followed by a dedication ceremony. Many local businesses showed their support with delicious food and beverages. Painting with Flowers provided beautiful floral arrangements for the buffet table.
Carolyn Levering, president and CEO, gave a warm welcome speech to the large crowd that filled the new, innovatively designed facility. The God Squad, Rabbi Marc A. Gelman and Monsignor Thomas J. Hartman, conducted the invocation. The NMF Board Chair, Joseph R. Gagliano, Jr., presented the recognition awards. Honored were Drew and Laurie Rayman, leadership donors, for their generous support of the NMF's Research Program and the new education and research center. Also honored, but not present, was Robert A. Boxer, M.D. Chair, Division of Pediatric Cardiology, Schneider Children's Hospital, North Shore University Hospital, in gratitude for 20 years of outstanding service to the Marfan community on Long Island.
How is Marfan syndrome (MFS) recognized? In most cases, Marfan syndrome is recognized from a person's physical characteristics. People with MFS tend to be considerably taller than others in the family unless they are also afflicted. The lower half of the body is especially long and the arm span is usually greater than the person's height. Fingers tend to be long and spidery. The chest bone can bend inward or outward and the spine is often curved by scoliosis. Additional possible characteristics are leanness, muscle mass being small, flat feet, loose-jointedness, and a backward curve of the legs at the knees. Most people having MFS are also very nearsighted with a narrow mouth, small jaw in a narrow, elongated head. Making the diagnosis is tricky since people with MFS may not exhibit all characteristics, while many people not having MFS may share many.
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 tissues make 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 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. A misconception that is common among many physicians is that aortic disease is rare, while it kills an estimated 25,000 Americans a year.
Recent studies about the increased life expectancy for people with Marfan's syndrome provide great hope and optimism, but only through increased awareness, earlier diagnosis and proper treatment can people with the disorder expect to live a normal life span.
The new NMF center is a non-profit organization, funded by donations, that is dedicated to providing lifesaving programs and services. Increased public awareness will play a major part in saving lives. To obtain additional information about the NMF and Marfan syndrome, please call the NMF at: 800-8-MARFAN or visit online at www.marfan.org.