SOURCE: National Marfan Foundation

March 29, 2006 08:30 ET

College Student to Testify to Congress on Behalf of Life-Threatening Disorder

WASHINGTON, DC -- (MARKET WIRE) -- March 29, 2006 -- Jessica Falco, 19, of Pound Ridge, NY, who is affected by the Marfan syndrome, a potentially fatal disorder of the body's connective tissue, is scheduled to testify today before the U.S. House of Representatives Appropriations Subcommittee on Labor, Health and Human Services and Education to increase awareness about this debilitating and sometimes fatal condition.

Jessica, who is a freshman at Loyola College, in Baltimore, MD, was diagnosed with Marfan syndrome when she was two years old. The following year, she was put in a body cast, which she wore for eight years. Because of the disorder, Jessica has had severe skeletal problems, resulting in major surgeries at the age of 11 and 13 and a long hospitalization at 15 for a collapsed lung. The Marfan syndrome has also affected her eyes, and she must have her heart and blood vessels evaluated yearly to monitor for enlargement of the aorta, which is prone to widen in people with the condition. Without medications, lifestyle adaptations and constant monitoring, the aorta is at risk of tearing or rupturing, which could cause sudden death.

Representing the National Marfan Foundation, the Port Washington, NY-based voluntary health organization that provides support and education and fosters research on Marfan syndrome, Jessica is asking the committee to approve a 5 percent increase in funding for the National Institutes of Health, specifically for the National Heart, Lung and Blood Institute, and the National Institute of Arthritis and Musculoskeletal and Skin Disorders.

"It is essential to continue supporting several programs, including a registry, program projects and a clinical trial for a new drug therapy," said Jessica. "This trial, which will be undertaken by the Pediatric Heart Network this September, holds real promise for eliminating the life-threatening cardiovascular issues of Marfan syndrome. It also holds promise for orthopedic and pulmonary issues so that others might not have to go through a childhood like mine."

"At present, the scientific opportunity for advances that significantly impact the care of people with Marfan syndrome is greater than ever before," said Josephine Grima, Ph.D., Director of Research and Government Relations, NMF. "The support of NIH, combined with the NMF Research Grant Program, makes it possible for researchers to conduct the studies that can lengthen the lives and enhance the quality of life for Marfan patients."

Marfan Syndrome and the National Marfan Foundation

Marfan syndrome and related genetic disorders affect an estimated 200,000 American men, women and children of every race and ethnic group. Early diagnosis, monitoring and treatment of the disorder are critical to saving the lives of affected people.

Marfan syndrome affects many organ systems, including the skeleton, lungs, eyes, heart and blood vessels. It is often, but not always, characterized by a tall stature and disproportionately long legs and arms. Other skeletal manifestations are curvature of the spine, a protruding or indented chest and loose joints. The most serious problem associated with Marfan syndrome is its effect on the aorta, the main artery carrying blood away from the heart.

The aorta is prone to progressive enlargement, which can lead to tears in the aortic wall that require surgical repair. If aortic enlargement and tears are left undetected, the aorta may rupture, leading to sudden death.

The life expectancy for people with Marfan syndrome who are diagnosed and treated is now in the 70s due to advances in cardiovascular surgery, increased options in medical therapy and better diagnosis. Without a proper diagnosis and medical management, they are at risk of aortic dissection and sudden death.

The National Marfan Foundation is a non-profit voluntary health organization dedicated to saving lives and improving the quality of life of individuals and families affected by Marfan syndrome and related disorders by:

--  Educating affected individuals, family members and the health care
    community about Marfan syndrome.
    
--  Advocating and funding basic and clinical research into the early
    detection and treatment of Marfan syndrome.
    
--  Providing a network of local and special-interest support groups to
    help affected people and their families share experiences.
    
For more information about Marfan syndrome, contact the NMF at 800-8-MARFAN or visit the NMF's web site at www.marfan.org.

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