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SUNY Upstate creates International Center for VCFS with Israeli medical center
SYRACUSE, N.Y. — SUNY Upstate Medical University has joined with Schneider Children’s Medical Center of Israel to create an international center that organizers say will enhance patient care, stimulate research and foster a greater understanding of velo-cardio-facial syndrome, a genetic disorder second only in prevalence to Down syndrome.
Velo-cardio-facial syndrome (VCFS), also known as Shprintzen syndrome, is a genetic disorder that can cause more than 180 medical complications, including immune disorders, congenital heart defects, aortic and artery abnormalities, feeding and speech disorders, cleft palate, autism spectrum disorder, and learning disabilities. It is also the single most significant genetic risk factor for developing psychiatric illness. The syndrome occurs when genetic material is missing on chromosome 22. Approximately one in 1,600 babies is born with VCFS. Going global in the treatment and study of VCFS has the potential to link preeminent centers, clinicians and researchers in all out push to advance diagnosis, treatment and knowledge of this genetic disorder.
Expected to join Schneider’s Children’s Medical Center and SUNY Upstate in the international center are the University of Geneva in Switzerland and Mater Children’s Hospital in Brisbane, Australia. All of these institutions are well regarded for their care of children with VCFS, officials say.
“The creation of this center marks a watershed in the treatment and study of VCFS,” said Robert Shprintzen, Ph.D., a professor at SUNY Upstate who discovered the syndrome in 1978. Shprintzen said that the center will help facilitate the cross-training of physicians and other health professionals, enable video conferencing of clinical management, facilitate travel between centers by staff and students and create research partnerships.
“We hope through this center to globalize the standard of care for VCFS and to energize and heighten collaborative research into this disorder,” Shprintzen said.
A study at SUNY Upstate is one of several worldwide seeking to find ways to predict the likelihood that one would develop mental illness as a result of VCFS, as not all people with VCFS develop mental illness. “Patients and their families tell us that the mental illness diagnosis related to VCFS is an ever-growing concern for them,” Shprintzen noted. “We must accelerate research in this area to be better able to manage this aspect of the syndrome and provide families with a greater knowledge of how they can help their children.”
Equally as important, Shprintzen noted, is the desire to address learning disabilities associated with the syndrome so that patients are better able to perform in school or at work.
Shprintzen noted that while there is still much work to be done on understanding the disease and all its conditions, great strides in treating the illness have been made. “Every day we move closer to gaining a more complete understanding of the factors that predict mental illness in VCFS patients,” he said. In addition, Shprintzen noted that surgical breakthroughs for correcting many of the syndrome’s physical disorders continue to be realized.
The center is based in Syracuse, New York, on the SUNY Upstate campus, which already is known internationally for its work in VCFS. Shprintzen, for whom the syndrome is named, is in high demand from patients worldwide. He treats more than 1,800 patients, mostly children, from as far away as Russia, the Philippines, Taiwan and Australia. The university undertakes more than $3 million in federally funded research into VCFS and served as host of the 11th International Scientific Meeting of the Velo?Cardio?Facial Syndrome Educational Foundation.
Funding for the center is being made possible by private and corporate contributions. A major fundraiser for the center is being held in Washington, D.C., June 13, at the Ritz-Carlton. The gala and auction will feature remarks from U.S. Sen. Joseph Lieberman, the
Washington Post’s Ben Bradlee and his wife, the journalist Sally Quinn, who will introduce a movie about the VCFS and the center that was produced by their son, Quinn Bradlee.
“Other than our medical conferences, this evening to support the center is dedicated to shining the spotlight on VCFS and what we can accomplish throughout the world with our collective energy and resources,” Shprintzen said.
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