National Marfan Foundation, Port Washington, Home to First Permanent Positive Exposure Display on Long Island


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




PORT WASHINGTON, NY, December 3, 2003 -- Positive Exposure, a unique photography project that combines visual arts, genetics, mental health and human rights, now has its first permanent display on Long Island - at the National Marfan Foundation Education and Research Center in Port Washington.



Positive Exposure, driven by former fashion photographer Rick Guidotti and Diane McLean, MD,
PhD, MPH, challenges the stigma associated with difference and celebrates human diversity. It attacks public fears about difference with positive images and powerful life stories. Positive Exposure constructs a mirror that simultaneously reflects society's injustices and potentials, developing practical methods that demonstrate how personal transformation and social transformation are inextricably intertwined.



"Traditional photographic images and medical stereotypes of people with genetic conditions are sadly negative - with little opportunity for individuals to celebrate diversity, to challenge stigma, to illustrate strengths, and to share their experiences," said Guidotti. "Positive Exposure confronts discrimination with powerful images and affirmative stories in order to fight ignorance, break down fears and reinforce self-esteem. Our hope is that through this initiative, we can truly bring about global change."



The exhibit at the National Marfan Foundation was unveiled today at the dedication of the NMF's new Education and Research Center (22 Manhasset Avenue, Port Washington). The exhibit consists of 25 images of people spanning ages, gender and ethnicities that capture the spirit of the Marfan syndrome. Selections from this exhibit were displayed in June 2001 at the Smithsonian Institute, in Washington, when Positive Exposure was showcased at the People's Genome Celebration: Exploring our Shared Inheritance, sponsored by the Genetic Alliance, the National Museum of Natural History and a coalition of genetics organizations, academia, government and industry.



"We are so pleased to showcase the Positive Exposure exhibit," said NMF President and CEO Carolyn Levering. "Rick's photos convey such powerful messages about the Marfan syndrome and how the physical differences caused by the condition are beautiful in their own right."



Positive Exposure Co-Directors



Rick Guidotti, who was educated in photography and filmmaking, specialized in portraiture and fashion photography for 15 years. Since 1998, he has focused on Positive Exposure, which was introduced internationally during World Press Week in a solo exhibition at the Galleria Carla Sozzani, Milan, Italy in April 2000.



Diane McLean, MD, PhD, MPH, is an experienced epidemiologist in the area of psychosocial research,particularly concerning the impact on health of stress, coping, social support and discrimination. She has been an Assistant Professor of Epidemiology at Columbia University and an Assistant Professor of Pediatrics at the Albert Einstein College of medicine. Most recently, she received the Weill Public Health Award upon her graduation from Weill Medical College of Cornell University. She is currently doing her residency in psychiatry at Columbia University.



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 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 Marfan 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 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 NMF and the Marfan syndrome, please call the NMF at
800-8-MARFAN.